Saturday, October 16, 2010

CFS research video

 
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Photos posted from CFSAC

 

Thanks to Angel Mac for getting those shots of our activists.
 
T-shirts say "NIH - what have you done for ME/CFS today?"
 
We need to have similar protests wherever possible.

Study – Inadequate NIH funding for CFS | CFS Untied

 
Pat tells it like it is -- not enough money and what there is goes to researching things not connected to CFS

Retrovirus Found Among Chronic Fatigue Sufferers That May Yield Bio

 

Change the name from chronic fatigue syndrome!

 

An old poll, and still relevant.  Be sure to read the comments at the end about what's good and bad about each name.
 

CFSAC meeting available online

The CFSAC meeting from October 12-14, 2010, appears to be already available on the following website:
http://hhs.granicus.com/viewpublisher.php?view_id=5
 
Patients who attended are using words like "optimistic", "impressed" and "hope".
 
The vote was unanimous to change the name to ME/CFS.  OK, not all the way to ME as we patients had been lobbying for, but a first step in the right direction.
 
And nowadays, who's really sure what to call it, anyway.  We're stuck on a merry-go-round between CFS, ME, XMRV, XAND, HGRV, HGRAD, and mash-ups thereof.  Eventually, the politically-motivated and the scientifically-motivated will settle on a single name.  But it's taken us 22 years to reverse the 1988 decision to change ME to CFS, so expect that process to be a series of baby steps.
 
Years ago, Katrina Berne wrote:
David Bell, M.D., considers the word "fatigue" inappropriate since it is defined as a response to
exertion that is relieved by rest, whereas CFS "fatigue" may result from little or no exertion and is not substantially relieved by rest.
...The CDC agreed to study the matter [of a name change] but later announced
that the adoption of a new name is premature. In a catch-22, the present name
trivializes the illness, thereby discouraging the research funding needed to
uncover the pathophysiology of the disorder, which would help determine a more
accurate name.
 
We now know that CDC intended that catch-22 to have exactly that effect.  When Elaine DeFreitas found a virus in CFS patients, CDC claimed to be unable to replicate her research, and again when Judy Mikovits found a virus in CFS patients, CDC claimed to be unable to replicate her research.  They didn't WANT to find anything, because Straus/Reeves had staked their reputations on It's All In Your Head. 
 
Now CDC is being exposed, as NIH and FDA were able to replicate Dr. Judy's work.  NIH has already adopted the ME/CFS terminology.  Eventually, CDC will either have to go along or become irrelevant.
 
First they ignore you, then they laugh at you, then they fight you, then you win.  -- Gandhi
In 1984, they ignored the evidence in Tahoe that there was an epidemic afoot.  In 1988, they gave the disease the laughable name CFS, and posted jokes at headquarters about these lazy, crazy patients.  Since then they've been fighting us at every turn.  And in the last year, thanks to the Whittemores' dedication, we have begun to win.
 
 
 
 

Exercise

 
"CFS breaks many of the rules health care providers are taught about how the body works in response to exercise." CFS patients are trapped in an alternate universe where exercise is not just difficult, but actually makes them sicker.
"University of the Pacific uses an objective measure – the patient's heart rate – to help patients be physically active without causing PEM
 
"Stretching and range of motion exercises can be implemented first, but the patient's heart rate must remain below the target AT. Once these activities are well tolerated, a patient may experiment with short-duration (less than 2 minutes), low intensity interval training. Again, the heart rate must stay below the target AT, and each interval must be followed by adequate rest."
 
* * *
I've had a judge tell me that I cannot have CFS because I still have muscle strength.  I've been doing stretching and resistance exercises all along to make sure that when I go into remission, that's one less thing that I have to build back up.   There are exercises that you can do lying down when you're confined to bed; the key is to find the ones that work for you.
 
Nowhere in the CFS diagnostic criteria does it say "muscles turn to jelly".  That patients are deconditioned is a myth propagated by the medical community so they can play Blame The Patient instead of seeking out the real reason for the patient's feeling of dis-ease.
 
I lack stamina, but not muscle.  I can still lift about the same weight as I did before I relapsed, the difference is that now I can only do it once, not for an hour at a time, and then have to lie down for a while.

Friday, October 15, 2010

XMRV On Everyone’s Mind at a Chronic Fatigue Syndrome Meeting

 
XMRV On Everyone's Mind at a Chronic Fatigue Syndrome Meeting
WSJ Health Blog
By Amy Dockser Marcus
October 15, 2010, 12:09 PM ET
http://blogs.wsj.com/health/2010/10/15/xmrv-on-everyones-mind-at-a-chronic-fatigue-syndrome-meeting/


The Chronic Fatigue Syndrome Advisory Committee — which advises the
head of HHS on policy and scientific issues related to CFS — just
wrapped up its latest meeting. During three days of presentations and
debate (you can watch it all here), it was hard to avoid talking or
thinking about XMRV.

That's the retrovirus that was linked to CFS in a study published last
year in the journal Science. Scientists have been debating the finding
ever since, with some labs finding the virus in a majority of CFS
patients and other labs not finding XMRV in a single case.

At the meeting's public comment period, CFS patients pressed for more
funding to study XMRV and to launch clinical trials. Many of the
patients wore shirts with "NIH: What have you done for ME/CFS today?" emblazoned on the front. And some held up "Act Now" placards. ("ME"
refers to myalgic encephalomyelitis/encephalopathy, another term used
to describe the condition.)

For the first time, an extra day was added to the advisory committee
meeting to focus solely on scientific developments; XMRV got prominent
billing. In its final recommendations to HHS, the committee called for
the creation of a national clinical trials network. "When [the science
behind] XMRV gets sorted out, we'll be ready to jump," advisory
committee member Nancy Klimas, a University of Miami professor who
runs a CFS clinic and researches the condition, tells the Health Blog.

The idea, Klimas says, is to set up a network of at least five centers
to serve as a kind of hub for research, clinical care and education.
Doctors would start collecting standardized clinical and research data
from patients at the sites, and teams of investigators would work
together to develop common clinical trial protocols to start pushing
drug development for CFS.

Yet a number of scientists at the meeting expressed caution about
XMRV. Stuart LeGrice, who has helped lead XMRV efforts at NCI, gave
the scientific talk on the virus and urged patients to wait until more
is known before taking anti-retroviral medications. (Some are already
taking the meds, as the WSJ reported recently.) "We're not far from a
controlled clinical trial," he told participants during a Q&A session.

And while XMRV is a hot topic, Christopher Snell, the chair of the
advisory committee, said at the meeting that research on XMRV has
"overshadowed" other possible CFS research avenues. Klimas tells the
Health Blog that research in CFS is finally yielding a number of
possible therapeutic strategies that spring from other hypotheses
unrelated to XMRV.

However, for patients like Robert Miller — who testified at the
meeting — it's clear what's providing the momentum in CFS research.
"This all started because of XMRV," he said.
 
 

Friedberg zings CDC

TO: CFS Advisory Committee

FROM: Fred Friedberg, PhD
President
IACFS/ME

RE: Public testimony given on October 13, 2010


As president of the IACFS/ME, an organization of over 500 biomedical and behavioral professionals, I thank the CFS Advisory Committee for this important opportunity to present testimony. Several weeks ago, the Centers for Disease Control issued a job announcement for Chief, Chronic Viral Diseases Branch. This includes primary responsibility for the direction and substance of the CFS research program. The program contains the largest single US budget for CFS research ($5 million/yr).

This is a critically important position that can influence science, practice, and health policy related to CFS. As such, we need a highly qualified individual to fill the position. According to the head of the search committee at CDC, several candidates will be recommended for further consideration. A new chief will probably be appointed in the next several weeks.

Apart from the necessary scientific credentials, I would like to excerpt a key job requirement from the job announcement:

----The ability [of the candidate] to deal effectively with the scientific community,… national and international health-related organizations, and the public at large.

This critical dimension of leadership has been and still is lacking at the CFS program at CDC. To date, the leadership of the Chronic Viral Diseases Branch has conveyed an attitude of dismissal bordering on arrogance toward the external scientific and professional communities. This attitude has generated mistrust and skepticism of the CFS research program – a mistrust which has been ongoing for the past decade.

IACFS/ME would like to see the position of Chief filled by someone who constructively engages with the scientific community. This important ability would preferably include a shared vision of the direction of biomedical research in CFS--- particularly in the challenging new domains of retrovirology and molecular medicine. These emerging areas of scientific inquiry may lead to new models of intervention that can offer hope and help for long suffering CFS patients.

Overall, we need open communication with the CDC/CFS program and fresh perspectives from their leadership--the qualities that could elevate this position to one that is viewed with renewed respect and credibility.

In keeping with the stated job requirements for the Chief, Chronic Viral Diseases Branch, IACFS/ME recommends the following:


1.  All candidates should be required to demonstrate their past experience and future potential to deal effectively with the external scientific community -- especially professional organizations which look to the CDC for enlightened leadership and scientific progress.
2.  When appointed , the new Chief should post a statement of intent on the CDC website with the following objectives:


-- to develop cooperative relationships with the external scientific community.
-- to be open to external input in the planning and implementation of studies relevant to CFS.

-- to publish detailed abstracts of their planned and ongoing CFS research in order to inform the scientific community and other stakeholders.

3. The CFS program should schedule regular meetings with scientists and clinicians in order to develop productive relationships on research and clinical management issues. Such regular meetings were part of the CDC's 5 yr. research plan. It's now 18 months since the release of the 5 yr. plan and no such meeting has been held.

4. Finally, the CDC should initiate an extramural grants program so that independent labs can generate innovative research that complements CDC-based studies.

These recommendations are consistent not only with job requirements but also with the Mission Statement of the CDC, which first and foremost emphasizes collaboration and partnerships to create the expertise, information, and tools that communities need to protect their health. The CDC mission also pledges to the American people to treat all persons with dignity, honesty, and respect.

http://www.cdc.gov/about/organization/mission.htm

In sum we ask that the candidate selected to head the CFS program be prepared to act in accordance with the CDC's own mission statement as well as the job's requirements: that is, to demonstrate the important ability to deal effectively with the external scientific community.

Thank you.

 


Dr. Myhill suspended from practice

To whom it may concern,

The news [see BBC web-link below] on October 15th 2010 that Dr Sarah
Myhill is to be suspended from medical practice for a year is utterly
disgraceful and simply beggars belief. Dr Myhill properly submitted her
mitochondrial ME/CFS work to peer-review and is an outstanding and
conscientious medical professional. If this General Medical Council
(GMC) ruling is allowed to stand and not successfully challenged by
judicial review then de-facto state-directed medicine has arrived in the UK.

Yesterday was a black day for ME/CFS patients, a black day for clinical
freedom, a black day for genuine medical science and a black day for the
country. It is shameful.

Progressive science-based forces must not be disheartened by such a
travesty. We must re-group, fight back and stand up for one of the best
and most outstanding doctors in UK general practice.

Kevin Short.
contact@angliameaction.org.uk

For further information see:
http://www.bbc.co.uk/news/uk-wales-mid-wales-11550075
http://www.supportdrmyhill.co.uk/
http://www.angliameaction.org.uk/docs/myhill-gmc-september-2010.pdf

[Permission to repost]
-ENDS-
 


Tom Hennessy's ENTIRE Testimony

 

 

Tom Hennessy's (entire) CFSAC Testimony from October 13, 2010

Good Morning, Chairman Snell, Dr. Wanda Jones, members of the CFSAC, The Panel, The listening public, Ladies and Germs,
             Thank you all for your efforts to make this meeting available on the Internet, so that the millions of sick people with these conditions around the world can have some access to see our government in action, or in this case, the LACK of action regarding these brutal illnesses over the past 3 decades. 
                When I asked many of our fellow M.E. and CFS patients if they wanted me to make any specific comments to you at today's meeting, the biggest response I got was "Why Bother?" They said, "We have been telling the truth to this committee and its forerunners for more than 20 years, and NOTHING has changed. So, Why Bother?" The vast majority of sick patients have NO confidence that the HHS Director will ever even READ, let alone implement the recommendations of the CFSAC panel or the patients, who further damaged their health by working for weeks to make a clear, concise and cogent speech to this committee.     
                  For many of us, who are SO sick and SO nauseous and in SO much pain, that simply listening to TV or radio is a painful and disorienting experience. To take the time and energy to condense decades of misery into a 5 minute speech is a Herculean task. To go through all this additional misery and pain, and not even have the HHS Secretary even read or acknowledge their suffering is a very painful and humiliating experience. To go through it for decades while lying in agony in their beds is pure torture. The sheer amount of physical misery we go through on a daily basis is incomprehensible to anyone who hasn't gone through it, let alone the mental misery we all experience every single day. If I could wave a magic wand and give our symptoms to every politician and businessman on this planet for ONE week, there would be Tens of billions of dollars approved for research, by the close of business the very next week. The sheer misery and torture of a severe case of what I refer to as Myalgic Encephalomyelitis is, and I repeat, incomprehensible to those who have not experienced it. 
                       Sad to say, the vast majority of people I heard from do NOT think that anything positive will happen from this meeting, based upon the 30 year or more track record of the NIH, the CDC, the HHS, the AMA, or any other agency charged with the task of trying to help some of the sickest people on the planet get some relief from their daily misery. I am asking you today, to prove them wrong!
                        I know what they are talking about, because for the past 26 years, I have been one of them. On April 15, 1989, at the VERY first International CFS meeting, I was asked to describe in layman's terms what it felt like to have this condition, and I said that "It feels like I have been beaten with pieces of rubber hose from head to toe, 24/7 for the past 2 years! if you 600 doctors in attendance today, do NOTHING else, then put together a correct definition and 'change the God damn name' then you will have accomplished a tremendous achievement. If you DO NOT get rid of the dreaded "F" word right now, here today, before this horrendous so called "Holmes Criteria" gets a foothold worldwide, then you will condemn untold millions of sick people all over the planet to decades of misery, pain, and premature death because of your Incompetence and cowardice!" 
                         There was spontaneous and sustained applause. I was shocked. There were catcalls and whistles. The members of the Press smelled a story and they crowded around Ms. Melinda Paras and myself at the Q and A session to ask what the real symptoms were and how serious this condition really was. I said that I didn't know what caused this disease, but that it had NOTHING in common with any kind of fatigue I have EVER experienced. I said there are more than 6.2 Billion "chronically fatigued" people on this planet today. And only a small fraction will experience the sheer misery of not even being able to walk ten feet from their bed to the toilet. Or to be in SO much pain, that it will take 6 Fentanyl patches, (which are 70 times stronger than Morphine)  to be able to crawl out of bed and cook dinner for your father who is dying from Alzheimers and then cooking a separate meal for your mother who suffers from severe osteoporosis, a 35 year hiatal hernia, and cataracts. 
                         For our government, to embrace the Long Term Insurance business tag line of "Delay, Deny and Hope you DIE!" is just criminal. The stunning incompetence of our medical establishment, and the truly heartless response for at least 3 decades that I know of is no longer just incompetence on a grand scale. I believe it is one of the major medical crimes of the past 40 years! It really is that bad. 
                          Now, Today's topic is DISABILITY. How sick and disabled are we? And how can that be evaluated and documented for Insurance purposes. And what if anything can help these patients return to work as productive members of our society. If the 22,000 or more letters, resumes, phone calls and emails that I have received over the past 25 years is any guide, this patient population is exactly the type of person that wants to return to work! I believe that the compassionate, ethical workaholic is more prone than other populations to come down with these terrible afflictions. We are actually the exact OPPOSITE of malingerers. As one psychiatrist said, "these are the very type of people that others call on a Friday night to come in to work, when others want to go out to a party". (I believe that this was Peter White in the UK who made that statement. But, I have found it to be true). However, there is SOME light at the end of this tunnel. I take the following quote from the opening page of the University of the Pacific's description of their raison D'etre:
              "Despite growing scientific evidence, there has been a strong belief by many physicians, insurers and others that these disorders are psychological. The Pacific Fatigue Lab has developed unique testing protocols that help more accurately assess the physiological status of patients who may be afflicted with fatigue-related disorders. Our goal is to facilitate an understanding of the biological basis for fatigue and provide objectively determined functional evaluations and therapeutic interventions that will improve quality of life for this population".  Stacy Stevens has done 1,000's of single cardiopulmonary exercise tests on chronic fatigue syndrome (ME/CFS) over the years and close to a hundred with the Stevens' Protocol at the Pacific Fatigue Lab. They are the considered the GOLD standard for measuring functional capacity. Whether in Stockton, Ca, Stanford U, Incline Village or Ithaca, New York they see the same general pattern again and again, a unique metabolic dysfunction that characterizes and objectifies the most mystifying symptom in the disease, post exertional malaise. If Anyone looks at the most comprehensive definition of these terrible disorders, the Canadian Case Definition for ME/CFS by Carruthers et al, you will see that the degree of debility varies greatly, but that if you use Koch's postulates that to define an illness or disorder 100% of patients must be afflicted with agent X, We all suffer from P.E.M. or Post exertional Malaise. This Steven's test costs roughly $2,000, but it does not need cutting edge materials or knowledge. You just need to  apply the "Steven's Protocol" and you can verify that we suffer devastating, but reproducible and quantifiable dysfunction in our autonomic nervous system if we attempt a  brief but rigorous exercise protocol for 2 or 3 days in a row.  Even dying Cancer or AIDS patients can return to a baseline level 24 hours after exertion. We can not!
 
21 years ago, I asked the panel of some 627 doctors and researchers assembled in San Francisco at the Hilton Hotel to find "something, anything, that is quantifiable and reproducible by people who do NOT trust us, and who do not believe we are ill, or who think that we are malingerers".
 
Since 1995, I felt that the tilt table test done by Drs. Rowe and Calkins at Johns Hopkins in Baltimore, Maryland was the gold standard. In many ways, it still is. I believe, and I have repeated at more than a dozen medical conferences for people who study these conditions that Louis Pasteur was correct when he said, "The antigen is nothing, the terrain is everything!". I believe that we have cases of "Different Insult, same result".
 
Now, the medical Director of the CAA in Charlotte is Ms. Suzanne Vernon, PhD, who used large computer databases at the CDC to prove my theory. I believe that any type of virus, bacteria, prion, mycoplasma, or more commonly, a group of such toxic 'insults' forces its way across the blood/brain barrier, usually, but not always during a time of great stress, resulting in a dysfunctional autonomic nervous system. I suggest that it is like "stripping the gears on a fine swiss watch". We all have our own brains, and our own exposures to various toxic insults every day. Those of us who have many neurons and synapses firing in our brains are often more intelligent, more creative, and more questioning than the average person. Many of us push ourselves harder than most "thus the derogatory term "yuppie flu" which really had nothing to do with money, but the type of person who pushes themselves beyond their limits during times of high stress.
 
But now we have both the excellent tilt table test, and the Steven's Protocol that prove that we suffer from P.E.M. They can now prove it to Insurance companies and disability evaluators.
 
The next big question is "How can we fix it?" I don't know. It will take large amounts of time and money to find that out. But lying to the public and denying the existence of such a brutal group of illnesses for decades will surely not fix the problem.
 
Now, I do want to publicly thank Dr. Judy Mikovits and the team at WPI. Dr. Sheila Bastien and Dr. Dan Peterson were able to do the proper testing to prove my illness to the Social Security Judge some 2 decades ago. But, sadly, even though I have been to many of the top doctors in this country, I am still in excruciating nerve and muscle pain 24/7 and I am unable to even care for myself, let alone a family. As Dr. Nancy Klimas, of the University of Miami HIV and ME/CFS center said last year, "I have treated thousands of HIV and ME/CFS patients over the past 2 decades, and today, If I had to choose one or the other, I would rather contract HIV than ME/CFS. Most of my AIDS patients are hale and hearty, whereas most of my ME/CFS patients are very sick".  
 
I would ask the audience for a brief applause to thank both Dr. Klimas and Professor Lenny Jason, both of whom have spent the vast majority of their professional careers devoted to easing the misery and pain of this patient population. They have fought against incredible odds, and at great personal and professional expense to serve their patients and to serve on this committee. Thank you Nancy and Lenny!  
 
Back to Bidness! It is 30 years on that I know of, and for many patients, things are worse than ever. The so called "Reeves empirical definition of 2005" has made a bad situation worse. It is worse than worthless. The Holmes and Fukuda criteria were a complete joke to most medical researchers, and they were a cruel hoax for us patients.  Supposedly, they were designed for research purposes, not for clinicians. But, they were used as clinical definitions from day one! YOU people represent the US government and the top of the medical pyramid in this country. IF YOU don't know what the heck you are talking about after at least 30 years in, then how do you expect overworked, front line GP's to know what to do with this epidemic.  
 
When I first fell Ill, the expert at NIH was Dr. Stephen Strauss. He told me that what I suffered from wasn't real. He said that it didn't exist and if it did, it wasn't serious, and it would be gone in six months. 24 years later, I still can barely get out of bed to use the toilet.
 
Today's topic at the CFSAC is about disability. Employers and LTD companies are only concerned about two things: Can you WORK and pay taxes, or attend school and pass your courses. They want to know two things: can we perform our usual job or profession. Or can we perform ANY job in the US economy. They want us OFF their books. Period! And because there are now so many of us, with various ailments and various disabilities under a similar umbrella, they want to get us off their books by ANY means necessary, legal or otherwise.  Many of my friends and colleagues are like me. Unable to care for ourselves, let alone someone else. We are not just disabled. We are SICK! I am very ILL. I feel like I have the flu from Hell every day of the week for 2 and a ½  decades. I was a 7 day a week worker all my life. Very active. 10 or 12 hour work days. many outside activities. In one night, I ate some raw shellfish, and BOOM! my life was destroyed. OVERNIGHT. Now, I have not been able to work 1 full day in 24 years!
 
Sadly, my case is not abnormal. due to early activism and media appearances, people wrote to me from all over the world. They kept saying "The doctor says all my tests are in the normal range!" so, I saw "your doctor is doing the wrong tests!"      
 
Right, now, we are lucky to have the chairman of this committee, Professor Christopher Snell right here in our midst. He works with a Ms. Stacy Stevens out at the University of the Pacific who designed the protocol I described to you earlier. They have a test that costs about $2,000. It can demonstrate beyond the shadow of a doubt that people who REALLY DO HAVE this condition (which I call Myalgic Encephalomyelitis) and who suffer from what we called PEM or Post Exertional Malaise! Most of us can not do any extensive exercise at any time. But ALL of us can not do strenuous exercise two or three days in a row! If your meeting today is about disability and how do you define it and how do you document it? how can you verify the disability that these patients claim they have. I say Give them the Stacy Stevens exercise tolerance test 3 days in a row. I will wager that IF these patients suffer from what I call M.E. This test will put them flat on their backs for at least a month. Other speakers will speak about other topics, but this is how you can document our disability.
 
Where do we go from HERE? Smarter minds than mine will have to figure that out! I will finish with the same line that I did 21 years ago. The late, great Sam Rayburn said, "Any jackass can kick a barn down, but it takes a damn fine carpenter to build one. We need YOU to be those damn fine carpenters to help rebuild what is left of our lives. Thank you for your time!
 
* * *
BRAVO!!!!!!!
 
 

Professional Patient Tip: 10 Tips for Visiting Someone Who is Sick

 

Thursday, October 14, 2010

What's in a name?

When that name is CFS, a lot of political fireworks.
 
I'm told that at this afternoon's CFSAC meeting, the name was officially changed to ME/CFS and that Dept of Health and Human Services and NIH are already using that name.
 
In December 2008, a small group of activists held a virtual town hall meeting, and prepared a report for the Obama/Biden Transition Team ( http://www.cfids-me.org/dhhs/longreport.pdf ) which was selected for publication on the transition team's website.  We won an activism award for that report, and now it appears that the Obama Administration is actually acting on our recommendations.  To say that we are pleased with this development is an understatement.
 
<tossing virtual confetti>
 
 
 
Note: The article refers to 'three additional studies published in the
Journal of Infectious Diseases [finding] no link between the virus and
the CFS'; however only one of the studies dealt with CFS, the other
two were on HIV/hepatitis C and prostate cancer patients, with the
prostate cancer study reporting positive results.

-----------------------------------------------------------------------------------

CFS Panel Wants Name Change for Disorder
By Emily P. Walker, Washington Correspondent, MedPage Today
Published: October 14, 2010
http://www.medpagetoday.com/InfectiousDisease/GeneralInfectiousDisease/22756


WASHINGTON -- A federal advisory committee unanimously endorsed a recommendation Thursday to change the name of chronic fatigue syndrome (CFS) to CFS-ME, citing a need to make the disease sound more serious.

The ME can stand for either myalgic encephalomyelitis or myalgic
encephalopathy, the panel said.

For its part, no member of the Chronic Fatigue Syndrome Advisory
Committee -- a committee of outside experts meant to advise the
Department of Health and Human Services (HHS) -- questioned the
validity of CFS.

The 11-member panel, which meets several times a year, wrapped up its
three-day meeting by endorsing two recommendations for HHS, one of
which was to add the "ME".

Using both the "CFS" and the "ME" is somewhat controversial to those
in ME groups because ME is seen by some as the more serious condition.

That is partly because it has a clearly identifiable trigger -- viral
illness -- whereas the causes of CFS continue to stymie the medical
community, and physicians diagnose CFS based entirely on symptoms.

But patients pleaded with the panel on Thursday to either change the
name altogether or else tack on the "ME."

"Fatigue is just one symptom of the disease," one CFS patient told the
panel via telephone. "You don't call Parkinson's 'shaking disease' or
Alzheimer's 'forgetting disease.'"

Panelist Susan Levine, MD, a physician and researcher who treats CFS
patients, agreed that the name "chronic fatigue syndrome" doesn't
accurately reflect the seriousness of the disease.

"If it has a more scientific name, we might receive more funding than if it has a name that sounds just like you need to take a nap," she said.

The panel also endorsed a recommendation for HHS to create a national
CFS-ME network of treatment centers in order to expand access to care,
to develop educational initiatives, and to allow researchers to share
data.

The panel has voted on a similar recommendation numerous times, but so
far, no such networks exist.

While there was a good amount of discussion of the role of xenotropic
murine leukemia virus-related virus -- XMRV for short -- in CFS, and
the recent rash of studies relating to the XMRV, the panel didn't
mention the retrovirus in any recommendations.

XMRV was first linked to CFS in 2009, when a paper in Science reported
finding evidence of XMRV in 67% of patients with the syndrome and 4%
of healthy controls.

That study has prompted CFS patients to call for more research into
the link, and some patients have reportedly been taking antiretroviral
agents off-label to treat their CFS.

More recently, a rash of studies have failed to confirm that XMRV has
any link to CFS.

A Dutch study from earlier this year failed to find any trace of the
retrovirus in the blood of CFS patients, leading the researchers to
conclude that the findings "cast doubt on the claim that XMRV is
associated with chronic fatigue syndrome in the majority of patients."

And just this week, three additional studies published in the Journal
of Infectious Diseases found no link between the virus and the CFS.

However, in another recent small study, blood samples from more than
80% of patients with chronic fatigue syndrome were found to have viral
gene sequences similar to those of murine leukemia virus (MLV).

Yoga soothes fibromyalgia pain - CNN.com

 

Wednesday, October 13, 2010

Dr. Deckoff-Jones "it's an outrage!"

 

The whole history of CFS is an outrage!
 
 

The latest from Dr. Deckoff-Jones "It's an outrage"

 
"In our need to fight the prevailing medical impression that it is a somatoform disorder, the very real neuropsychiatric manifestations of the disease have been denied, even sometimes to ourselves."
"How pathetic that there's a chance to study something that could actually control the underlying cause of the disease and instead money is being spent to find out again what we already know. Results I can figure out from my email. While individuals undertake antiretroviral trials on their own. Begging to be lab mice.  ...
  It's an outrage."
* * *
I personally believe in the mind-body connection -- when I'm stressed, my symptoms are worse -- but Jamie is right, it's not something that gets talked about much in the patient community because as soon as you say words like "mind" or "stress" or "emotional", people like Reeves and Wessely will jump on it as proof that we're just emotional basket cases and feed us anti-depressants.
 
But it's something that needs open-minded investigation, by people who are willing to accept that ANY severe health condition comes with the risk of depression (but that doesn't mean cancer is "caused" by depression or can be cured with anti-depressants), and are able to consider that these neuropsych issues are a result, rather than a cause.
 
The whole history of CFS is one big outrage.  Like the Tuskegee experiment victims, we need to demand reparations.  Some of us could have kept working with proper treatment.  The second wave of patients didn't have to get sick at all -- the government could have and should have been working on a treatment/cure with the same diligence that got a cure for SARS in 8 days.  That proves that it's possible to figure out a virus very quickly, if you're willing to admit that it's a health threat.

Jean's Testimony to the CFSAC Commitee

 

My Testimony to the CFSAC Committee

by Jean Maskuli on Wednesday, October 13, 2010 at 5:47pm

I keep using the word village, placing it in words and parts of speech where it doesn't belong: I just saw that movie I Am Village. My parents have a Village on the Upper East Side. I love your village.

 

Apparently, my disease has some unhealthy obsession with community.

 

My doctor doesn't look at me when he talks. At least, not anymore. When I was twenty he smiled broadly, and promised me a thousand better days. But now, he just reads blood work: Epstein Barr. Elevated. 300% Above Normal. HHV6A. Elevated. 160% Above Normal. Mycloplasma Pneumonia. Elevated. 300% above normal…

 

I can't write it down fast enough.

 

Maybe he's grown tired of patients that never get any better. Or maybe it's that I'm getting older and he knows the statistics: Suicide. Mean Age. Thirty-nine. Heart disease. Mean Age. Forty-nine. Cancer. Mean age. Fifty-nine….

 

Sometimes, they just lie down and never get up.

 

How ironic it is to have this heart placed beating so badly in a body that is always breaking down. I probably could have ruled the world, climbed Mount Everest, lived for a thousand nights like a Bedouin in the desert, but now, all I do is sleep. When I dream, I dream of cures. When I wake, the bed is soaked.

 

Night sweats.

 

Aaron brings me cupcakes from Crumb. You need to eat more, the doctor says. All I eat is frozen fruit. Nothing tastes right, but the cold of the frost numbs my burning tongue, and soothes my scratching throat.

 

I'm tired of being sick.

 

I toss around this concept called life in my head. But, my dog is in Heaven waiting by the swimming pool. My grandmother dances like a child in the lawn. My grandfather waves as he grills hot-dogs from the porch.

 

And my friends, my friends, left long ago are also on their way.

 

 

 

 

Survey on CFIDS/ME -- anonymous questionnaire

Apologies, wrong link. This is the correct one: http://www.surveymonkey.com/s/HHBB75P

-----Original Message-----
From: Herman Salton
Sent: 13 October 2010 21:45
To: 'CO-CURE@listserv.nodak.edu'
Subject: NOT: International Survey on CFIDS/ME - invitation to fill in anonymous questionnaire
Importance: High

Dear All

I am a researcher preparing a book on CFS/ME/CFIDS and I am trying to get as many experiences from CFS patients as possible, with the aim of giving voice to them in the book. I was wondering whether any of you could help?

I have already gathered several experiences from the Spanish-speaking, French-speaking and Italian-speaking world, with the aim of showing in the book that the experiences/problems faced by patients are very similar throughout the world, and I would be keen on gathering experiences from the US as well.

I have developed a questionnaire in several languages (attached please see the English version) and I was wondering whether you would be willing to fill it in and distribute it as widely as possible? I have explained both the questionnaire and the reasons behind it in the document. The questionnaire is anonymous and also be filled in online at http://www.surveymonkey.com/s/HHBB75P 

I should also point out that I myself suffer from CFIDS, so I obviously have a very strong interest in this matter and no interest whatsoever in speculating on other fellow sufferers. I only want to raise the awareness of this very insidious disease and, since I am still able to write and I am an academic, shake up a bit the medical establishment in the process!

Thank you very much in advance for your help and please do not hesitate to contact me, should you need further information.

With my warmest regards and very best wishes for your health!

Herman

Dr Herman Salton
BA (Italy), MPhil (Oxford), PhD (Auckland)
Email: herman.salton@auckland.ac.nz
Or herman.salton@exeter.oxon.org

*Waiting on a phoenix* *Greg Crowhurst*

*Waiting on a phoenix*
*Greg Crowhurst*
*(permission to repost)*

Four fifteen in the morning and I'm thinking; what will it take for a
phoenix to reach us here ?   I hold Linda, my wife's,   hand as  Florencio
Avalos emerges from the escape capsule ; his young son bursting into tears.

Children have been denied to us, by ME.

Linda, herself ,  has been trapped  underground now since 1993.

  The two of are buried deep . 2362 feet beneath the surface : that's a good
an estimate as any. Our Doctor called yesterday and admitted that her life
has not one of the ordinary  pleasures that, well, make life even bearable.
Food, drink, socializing, music, reading, cinema, theater, walking...
joining me on my morning bike ride.

Both of us have a classy  Dawes Galaxy : serious bikes. One time, before
she got ill for 17 years,  Linda,  head held high,  flew off down a hill at
such speed I could not catch her up. Well  she would, she used to cycle 18
miles a day to work. She's got the build of an athlete. This woman whose
days  consist  in surviving on cold salad and moving from bed to chair, in a
miasma of exquisite pain and paralysis. ...

...whose spider-infested bike  lies long  buried, down the shed, under years
of flowerpots, discarded lawnmowers and cardboard boxes....2362 feet beneath
the wicked, deliberately placed  rock pile  that is "CFS".

Each time someone uses the word "CFS" - or "forward slash CFS" , to
describe this disease, another rock is added to the hardening , growing
pile.

Down, down deep in the darkness here , though,   lies "ME", like that three
thousand year old seed that was found in a portion of a  tree,  in an
ancient Egyptian tomb, back in the nineteenth century, Ramsay -defined ME,
with all its promise of serious research lies dormant . We were doing so
well back in the day , until the CDC came along .

That seed grew though , even after three thousand years.

We need people to know we are here. Peggy Munson's blog :
http://peggymunson.blogspot.com/
on what we can learn from the AIDS community, is the best thing I've read
yet on how to make ourselves heard.

Meanwhile, waiting here on a phoenix, with  as much fierce courage as those
miners, we can at least begin to dig ourselves,  if not out, at least no
deeper.

--
Greg Crowhurst
www.stonebird.co.uk
(The Lived Experience of Severe ME)

Tuesday, October 12, 2010

Hearing from Those Who Suffer Mostly in Silence » White House Chron

 

The Countess of Mar battles again for ME in Lords’ debate

 
"She said she understood but then suggested that a lot could be cured just by thinking differently. I don't think she really appreciated how severe the symptoms are, or that when I said I couldn't do something I really meant that I couldn't do it."
 
* * * 
I got the same thing from the doctors who thought it was just post-divorce depression.  I got a pep talk about needing to believe in myself, and "you'll be surprised how much you can do if you try", then got cut off when I tried to clarify that "I can't" doesn't mean "I'm afraid to", it means "I've repeatedly tried and repeatedly failed".
 
No, I will not feel better if I get a job to take my mind off my troubles ... at the time, I was trying to work at home lying on the couch and couldn't even handle that, so functioning for 8 hours straight after the exertion of commuting and while trying to sit upright absolutely wasn't going to happen.  I was not depressed *after* losing my job; I lost my job as a result of already having symptoms that don't square with a depression diagnosis.  But it was easier for the doctor to shoehorn me into the desired diagnosis by flipping cause and effect.

And since that didn't fit what he wanted to hear, he also cut me off every time I tried to explain how my symptoms affected my ability to work.  A divorced woman who wants lifetime alimony isn't going to try to work, so he had to prevent me from telling him that I was working.
 
If I had one wish guaranteed to be granted, it would be for doctors to LISTEN.  Open-minded, really listening and writing down what the patient actually says, not with the idea that "I want to hear the patient say this", and then writing down what the doctor wanted to hear.  I've even put things in writing so that there's no question about what the doctor was told, and had them converted into something else entirely when they made their way into his notes.
 
 

Monday, October 11, 2010

Knowledge or Belief?

Permission to Repost

http://www.meactionuk.org.uk/Knowledge-or-Belief.htm

Knowledge or Belief?
Margaret Williams
9th October 2010


Four forthcoming events may significantly affect the lives of people with
ME/CFS: the results of the MRC PACE Trial on "CFS/ME" are expected to be
published soon; the General Medical Council (GMC) is shortly to decide
whether or not to launch a full inquiry into the alleged misleading of the
High Court during the Judicial Review of the NICE Clinical Guideline 53 by a
member of the NICE Guideline Development Group (GDG); on 29th November 2010
the Fatigue Service at St Bartholomew's Hospital will hold a training day
and a birthday party in the Great Hall of Barts to celebrate 25 years of
Professor Peter White's services to those with "CFS/ME", and in December
2010, using the same GDG members, NICE is to consider if there has been any
new research that necessitates a revision of its much criticised 2007
Guideline CG53 on "CFS/ME".



The common thread between these events is, of course, the beliefs of the
Wessely School about ME/CFS (which they invert and refer to as "CFS/ME") and
their continued refusal to engage with the extensive biomedical and
scientific knowledge about ME/CFS that identifies damage, deficits and
dysfunction in major bodily systems, particularly in the neurological,
immune, endocrine and cardiovascular systems.



At the Barts Fatigue Service celebrations, Professor Wessely's talk is
entitled: "Where we were then, where we are now" and Professor White is to
speak on: "PACE Trial: is knowledge more useful than belief?"



Is knowledge more useful than belief? Not, it seems, where ME/CFS is
concerned.




Why not? Because where the Wessely School is now in relation to ME/CFS is
little different from where it was 25 years ago – their beliefs remain
static and they have resolutely not moved forwards in the light of
knowledge.



They perversely and irrationally reject the ever-increasing body of
biomedical knowledge that ME/CFS is a serious neuroimmune disease
and
continue to believe that it is a somatoform disorder which is curable by
their favoured interventions of cognitive restructuring and incremental
aerobic exercise. Professor Peter White claims that "a full recovery is
possible" (Psychother Psychosom 2007:76(3):171-176); the PACE Trial CBT
participants' Manual informs people that the PACE Trial therapies are
curative, and it is elsewhere asserted that "many people have successfully
overcome their CFS/ME" with such behavioural interventions ("Information for
relatives, partners and friends", page 123). Such a belief is not supported
by knowledge.



With the publication of the PACE Trial results being imminent, it is worth
recalling the already-published results of its sister trial, the FINE Trial
(Fatigue Intervention by Nurses Evaluation) that was funded entirely by the
MRC and had 296 participants: the FINE Trial was a resounding failure on all
fronts,
so it is difficult to see how the PACE Trial results might be
glowingly successful.



The FINE Trial results clearly showed that "pragmatic rehabilitation" (PR,
based on CBT/GET) was minimally effective in reducing fatigue and improving
sleep: it did so only whilst participants were engaged in the programme and
there was no statistically significant effect at follow-up. Furthermore,
pragmatic rehabilitation had no statistically significant effect on physical
functioning; equally, its effect on depression had diminished at follow-up.
Moreover the other intervention being tested ("supportive listening" or SL)
had no effect in reducing fatigue, improving physical functioning, sleep or
depression.



Notwithstanding, the investigators are already seeking further funding to
test their hypothesis that providing more sessions might improve the
effectiveness of pragmatic rehabilitation which they state "will inform the
next phase of our work….The first phase of this work will be in conjunction
with the Greater Manchester CFS Service".



The PACE and FINE Trials, as well as the recommendations in the NICE
Guideline CG53, were predicated on the Wessely School's beliefs, not on
existing biomedical knowledge.



The existing knowledge is that the interventions do not work, but the belief of the investigators is that they ought to work, thus belief triumphs over knowledge.



Of particular note is what Professor Wessely said on 26th July 2010 during
the final of "Debating Matters" filmed in India. The subject was
"Alternative Medicine is Quackery"; discussing people who make what he
regards as false claims about the success of alternative medicine and
comparing them with the scientific rigour of modern medicine, Wessely said,
apparently without a trace of insight: "They do not change their beliefs or
their practice on the basis of the evidence
, that's the difference that
we're talking about. It's the ability to move from dogma to science and to
say yeah, it sounded good at the time, but the evidence shows that it isn't,
so we move on, we research, we try and progress, that's the difference we're
talking about" (http://www.spike.com/video/alternative-medicine/3439367). It
has been said, and might still be said, that this is precisely the argument
that has been levelled against the Wessely School in relation to ME/CFS –
the behavioural modification approach may have sounded good at the time, but
the evidence shows that it isn't, so it's time to move on. They, however,
refuse to do so and steadfastly hold on to their own blind beliefs. The
tragedy for people with ME/CFS is that the Wessely School seem unable to
apply the same logic they require of others to themselves.



In relation to the GMC, if the complaint about the GDG member is upheld, it
would, according to one of the lawyers "be strong grounds for re-opening the
(Judicial Review) and would seriously undermine NICE".



Eight years before the NICE Clinical Guideline 53 was published, the British
Medical Journal carried a compelling article on Clinical Guidelines
(Potential benefits, limitation, and harms of clinical guidelines; Steven H
Woolf et al; BMJ 1999:318:527-530).



The article provides a clear warning of the dangers arising from an
uncritical adherence to clinical guidelines:



"Over the past decade, clinical guidelines have increasingly become a
familiar part of clinical practice. Every day, clinical decisions…and health
spending by governments and insurers are being influenced by guidelines".



"Many believe that the economic motive behind clinical guidelines is the
principal reason for their popularity".



"The most important limitation of guidelines is that the recommendations may
be wrong".



"Practices that are sub-optimal from the patient's perspective may be recommended to help control costs, serve societal needs, or protect special interests (those of doctors…or politicians, for example)".



"The promotion of flawed guidelines by practices, payers, or healthcare
systems can encourage…the delivery of ineffective, harmful or wasteful
interventions".



" Recommendations that do not take due account of the evidence can result in
sub-optimal, ineffective, or harmful practices".



"Flawed clinical guidelines harm practitioners by providing inaccurate
scientific information and clinical advice, thereby compromising the quality
of care….Outdated recommendations may perpetuate outmoded practices".



"Guidelines can harm medical investigators and scientific progress if
further research is inappropriately discouraged".



"Guidelines developed by specialists may seem to be self-serving (and)
biased".



"Naïve consumers of guidelines accept official recommendations on face
value, especially when they carry the imprimatur of prominent professional
groups or government bodies. More discerning users of clinical guidelines
scrutinise the methods by which they have been developed".



"…those concerned with improving quality should redirect their efforts to
identify the specific barriers…that stand in the way of behaviour change".



The evidence for retroviral involvement in ME/CFS is becoming impossible for
NICE to dismiss, for example, from 1st November 2010 there is to be a
lifetime ban in the UK on people with ME/CFS donating blood, a paradigm
shift that was reported nationwide and worldwide, even in The Himalayan
Times(http://www.thehimalayantimes.com/fullNews.php?headline=ME+sufferers+ba
nned+from+donating+blood&NewsID=260959) so NICE cannot claim to be unaware
of the significance of it. Moreover, given the known intercourse between the
UK and the US about ME/CFS, NICE can hardly be unaware that world experts in
ME/CFS such as Professor Nancy Klimas (principal investigator of the
National Institute for Health's Centre for Multidisciplinary Studies of
(ME)CFS Pathophysiology at the University of Miami) are clear: "…there is a
chronic inflammation, neuro-inflammation, and it upsets the whole balance of
your systems…the patients become terribly ill…. The immune system is really
cranked up; it's a tremendous amount of inflammation. I think that if
doctors could get this in their heads that it's sort of like lupus or one of
these really inflammatory disorders…it is that level of inflammation.
There's a tremendous amount of inflammatory stuff going on, and there's a
lot of inflammation in the brain itself"
(http://www.litemiami.com/spotlite/index.aspx)



The evidence of inflammation in people with ME/CFS is important because the
incremental aerobic exercise recommended by the Wessely School and
encapsulated in NICE's Clinical Guideline 53 is contra-indicated in cases of
inflamed and damaged tissue and inevitably results in post-exertional
relapse with malaise, which is the cardinal symptom of ME/CFS.




Can NICE credibly continue to ignore the warning that was carried in the BMJ
eleven years ago about the harm caused by flawed guidelines, or will it
continue to prefer belief to knowledge?



Do entrenched beliefs that continue to be held in defiance of knowledge
cause harm to patients?



Countless people with ME/CFS and their families know the answer to that
question.



http://www.meactionuk.org.uk

Whittemore Peterson Institute - In the News

 
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Patients with chronic fatigue syndrome performed worse than controls in a contro

 
The (provisional) full text is available for free at:
http://bit.ly/aIKH8k   i.e.
http://www.translational-medicine.com/content/pdf/1479-5876-8-93.pdf   

Final full text will be linked from:
http://www.translational-medicine.com/content/8/1/93/abstract  

Patients with chronic fatigue syndrome performed worse than controls in a controlled repeated exercise study despite a normal oxidative phosphorylation capacity

Author: Ruud Vermeulen, Ruud Kurk,Frans Visser,Wim Sluiter,Hans Scholte

The aim of this study was to investigate the possibility that a
decreased mitochondrial ATP synthesis causes muscular and mental
fatigue and plays a role in the pathophysiology of the chronic fatigue
syndrome (CFS/ME).

Methods: Female patients (n=15) and controls (n=15) performed a
cardiopulmonary exercise test (CPET) by cycling at a continuously
increased work rate till maximal exertion. The CPET was repeated 24 h
later.

Before the tests, blood was taken for the isolation of peripheral
blood mononuclear cells (PBMC), which were processed in a special way
to preserve their oxidative phosphorylation, which was tested later in
the presence of ADP and phosphate in permeabilized cells with
glutamate, malate and malonate plus or minus the complex I inhibitor
rotenone, and succinate with rotenone plus or minus the complex II
inhibitor malonate in order to measure the ATP production via Complex
I and II, respectively. Plasma CK was determined as a surrogate
measure of a decreased oxidative phosphorylation in muscle, since the
previous finding that in a group of patients with external
ophthalmoplegia the oxygen consumption by isolated muscle mitochondria
correlated negatively with plasma creatine kinase, 24 h after
exercise.

Results: At both exercise tests the patients reached the anaerobic threshold and the maximal exercise at a much lower oxygen consumption than the controls and this worsened in the second test.

This implies an increase of lactate, the product of anaerobic
glycolysis, and a decrease of the mitochondrial ATP production in the
patients. In the past this was also found in patients with defects in
the mitochondrial oxidative phosphorylation.

However the oxidative phosphorylation in PBMC was similar in CFS/ME
patients and controls. The plasma creatine kinase levels before and 24
h after exercise were low in patients and controls, suggesting
normality of the muscular mitochondrial oxidative phosphorylation.

Conclusion: The decrease in mitochondrial ATP synthesis in the CFS/ME
patients is not caused by a defect in the enzyme complexes catalyzing
oxidative phosphorylation, but in another factor.
Trial registration: Clinical trials registration number: NL16031.040.07

Credits/Source: Journal of Translational Medicine 2010, 8:93


Latest letter from Dr. Hooper

**MRC PACE Trial
Permission to Repost
http://www.meactionuk.org.uk/PACE-Hooper-071010.htm


This is the letter which was sent by Professor Malcolm Hooper,on the 7th
October, to The Rt Hon Dr Vince Cable MP, Secretary of State with
responsibility for the Medical Research Council(MRC), relating to the
failure of the MRC to respond to his formal complaint on the PACE Clinical
Trial, which he first lodged on the 11th February 2010. May be reposted.

.........................................................................................................


The Rt Hon Dr Vince Cable MP
Secretary of State
Department for Business, Innovation and Skills
1, Victoria Street
London
SW1H 0ET

7th October 2010

By Special Delivery

Dear Dr Cable,

re:Complaint about the MRC PACE Trial on "CFS/ME"

Mindful of your record of commitment to and concern about the serious plight
of people with the neuroimmune disorder myalgic encephalomyelitis/chronic
fatigue syndrome (ME/CFS), I ask that in your position as Secretary of State
responsible for the Medical Research Council (MRC), you will respond
promptly and fully to this letter.

Having received no response from the Medical Research Council to our
concerns about the PACE Trial that purports to be studying this disorder, on
11th February 2010 I lodged a detailed complaint with the Minister then
responsible for the MRC, The Rt Hon The Lord Drayson, enclosing a bound copy
of my 442 page fully referenced report "Magical Medicine: how to make a
disease disappear" setting out the evidence
that forms the basis of my
complaint.

He replied by letter dated 8th March 2010 (his reference being
2010/0013270POLD), advising that I should raise the matter formally with Dr
Morven Roberts of the MRC Clinical Trials Unit, which I duly did by letter
dated 30th March 2010, with which I enclosed a further bound copy of my
report.

I specifically asked Dr Roberts for an informed and considered response and
not the standard and dismissive pro forma MRC letter that has been sent to
numerous people who have already written to the MRC expressing their
concerns about the inappropriateness of the PACE Trial, the false beliefs of
the small but influential group of psychiatrists upon which it is
predicated, and its very real potential for iatrogenic harm.

My letter and the accompanying report were sent by Special Delivery and were
received by the MRC on 1st April 2010, for which the Royal Mail provided a
signed receipt.

I did not receive the courtesy of an acknowledgement, so six weeks later, on
18th June 2010, my research assistant telephoned the MRC and asked to speak
to Dr Morven Roberts. When my assistant explained that the enquiry related
to my formal complaint about the PACE Trial, she was informed that there was
no-one of the name of Dr Morven Roberts in the Clinical Trials Unit and was
met with a total refusal to discuss the matter, the MRC employee saying: "I
think I'm going to have to put the phone down", which she rudely did. The
episode was a quite extraordinary response to a simple and polite request to
speak to Dr Morven Roberts in relation to a complaint about an MRC trial.

The following day, Dr Morven Roberts sent me an email (incorrectly addressed
to Professor "Cooper") in which she wrote: "I understand you have recently
tried to contact me in regard to your complaint lodged with me as Clinical
Trials Manager about the PACE Trial. I can let you know that the MRC are
working through the large document you have sent and will respond in due
course. Morven".

Despite it being over six months since I lodged my complaint and four months
since Dr Morven Roberts assured me I would receive a response, I have heard
nothing from the MRC. I am sure you will agree that such a delay in such an
important matter is unacceptable.

On 5th October 2010, my research assistant telephoned your Department,
quoting the reference number on Lord Drayson's letter of 8th March 2010, to
seek your personal commitment to pursue this issue as a matter of urgency,
only to be informed that there is no record of my complaint as Lord
Drayson's reply to me has been lost and that I must start my complaint all
over again. She was informed that someone from your office would ring her
back that same day; you may not be surprised to know that no-one bothered to
do so.

Reasons why this complaint is now urgent

The MRC PACE Trial intentionally used the Principal Investigators' (PIs')
own entry criteria for "CFS" (the 1991 Oxford criteria), yet these criteria
lack diagnostic specificity, have been shown to have no predictive validity,
and select a widely heterogeneous patient population which may or may not
include people with true ME/CFS. It is virtually unheard of for studies to
use criteria that have been superseded; indeed, one of the PIs himself,
Professor Michael Sharpe – who was lead author of the Oxford criteria --
stated in 1997 that they "have been superseded by international consensus"
(Occup Med 1997:47:4:217-227).

Of equal concern is the fact that the PIs and other psychiatrists involved
with the PACE Trial continue to regard ME/CFS as a behavioural disorder and
refuse to engage with the extensive biomedical and scientific evidence that
identifies damage, deficits and dysfunction in major bodily systems of
patients with ME/CFS, particularly in the neurological, immune, endocrine
and cardiovascular systems. For over two decades they have asserted that ME does not exist (and that it is merely an "aberrant belief" that one has a disorder called ME); they equate it with chronic "fatigue", a completely different disorder classified by the WHO as a psychiatric disorder in ICD-10 at F48.0, whilst ME/CFS is classified as a neurological disorder at ICD-10 G93.3.

The potentially harmful results of the PACE Trial for those with ME/CFS are
particularly important in the light of the findings of the strong
association between ME/CFS and a retrovirus (XMRV) of the same family as
HIV/AIDS. The findings of that paper, published one year ago in the journal
with the highest impact factor of any scientific journal worldwide (Science
2009:326:585), have been confirmed and strengthened by further research
published in August 2010 in the Proceedings of the National Academy of
Sciences (PNAS 10.1073/pnas.1006901107) showing polytropic murine leukaemia
virus-related viral sequences (MLV) to be present in the blood of 86.5% of
patients studied.

The over-riding international concern is that when the PACE Trial results
are eventually published, they will deliver what has long been known to be
the PIs' intention and primary objective, ie. the results will confirm the
PIs' favoured intervention of "cognitive restructuring" (which incorporates
graded aerobic exercise) as the intervention of choice. This is an
intervention that is specifically designed to disabuse ME/CFS sufferers of
their (correct) perception that they suffer from a serious, multi-system
neuroimmune disease.

The cognitive modification is directive, not supportive, ie. it is not
offered as adjunctive psychological support for those dealing with a
life-wrecking illness because the PACE Trial Manuals claim that it is
curative: the chief PI, Professor Peter White, claims that "a full recovery
is possible" (Psychother Psychosom 2007:76(3):171-176); the participants'
CBT Manual informs people that the PACE Trial therapies are curative, and it
is asserted that "many people have successfully overcome their CFS/ME" with
such behavioural interventions ("Information for relatives, partners and
friends", page 123).

To recommend behavioural modification strategies for those suffering from such devastating organic illness would be inhumane and inexcusable: if such an intervention were to be imposed on those with other neurological diseases (such as motor neurone disease or multiple sclerosis) to force them to change their correct perception that they suffer from a serious organic disorder, it would be roundly condemned as unethical.

You may already be aware that a world expert on both HIV/AIDS and ME/CFS is
on record as stating:

"I hope you are not saying that (ME)CFS patients are not as ill as HIV
patients. I split my clinical time between the two illnesses, and I can tell
you that if I had to choose between the two illnesses I would rather have
HIV" (Nancy Klimas, one of the world's foremost AIDS and ME/CFS physicians;
Professor of Medicine and Immunology, University of Miami
; New York Times,
15th October 2009). In addition, in a radio interview on 19th September
2010, she stated: "…there is a chronic inflammation, neuro-inflammation, and
it upsets the whole balance of your systems…the patients become terribly
ill…. The immune system is really cranked up; it's a tremendous amount of
inflammation. I think that if doctors could get this in their heads that
it's sort of like lupus or one of these really inflammatory disorders…it is
that level of inflammation. There's a tremendous amount of inflammatory
stuff going on, and there's a lot of inflammation in the brain itself
"
(http://www.litemiami.com/spotlite/index.aspx ).

This is important, because the incremental aerobic exercise recommended by
the PACE Trial Principal Investigators is contra-indicated in cases of
inflamed and damaged tissues and inevitably results in post-exertional
relapse with malaise, which is the cardinal symptom of ME/CFS.

Furthermore, in a lecture on 24th April 2010, Anthony Komaroff, Professor of
Medicine at Harvard and another world expert on ME/CFS, said on record in
answer to the question whether or not he would consider ME/CFS a
neurological illness: "…there is now abundant evidence of measurable
abnormalities in the central nervous system and the autonomic nervous system
in people with this illness. That makes it neurological
…That's why I think
it makes sense…to call it Myalgic Encephalomyelitis…because I think those
two words adequately classify or describe an underlying biology that tests
have shown to be the case" (http://www.masscfids.org/news-a-events/2/221 ).

As the evidence for retroviral involvement in ME/CFS becomes impossible to
dismiss, it becomes paramount to prevent the potentially damaging PACE Trial
results from being applied nationally to anyone with the label "CFS/ME" who,
given the indisputable heterogeneity of the PACE Trial cohort, may have
either chronic tiredness for which psychological interventions may be
appropriate or a multi-system neuroimmune disorder for which behavioural
modification is contra-indicated.

I trust you will appreciate the gravity and urgency of the current situation
that adversely affects an estimated 240,000 people in the UK (for
comparison, the Multiple Sclerosis Society estimates that there are 83,000
sufferers in the UK) and that your own involvement will be both prompt and
efficacious. The situation is particularly pressing now that people with
ME/CFS are embroiled with new legislation that many fear – and some have
already found – is threatening to remove state benefits they currently
receive that are vital to support their severely sick and damaged lives.

It is completely unacceptable that Dr Roberts and the MRC can be permitted
simply to ignore this complaint (which has received worldwide academic
attention, comment and support) in order to protect the unsustainable
beliefs of a handful of psychiatrists who work for the medical and permanent
health insurance industry and the scandalous waste of over £5 million,
especially given that the effects of the interventions on over 3,000
patients were already known to be at best ineffective and at worst to be
actively harmful in 50% of cases (for references, see "Magical Medicine" --
the copy that was sent to Lord Drayson should still be in your Department
but I will provide a further copy if necessary).

I ask that you give this matter your urgent attention; that you will
intervene to expedite the promised response from Dr Morven Roberts and that
you personally will supervise and approve her response.

Yours sincerely,

Malcolm Hooper

cc. Dr Morven Roberts, Clinical Trials Unit, MRC, 20 Park Crescent, London
W1B 1AL

Check out CFS Chronicles: Llewellyn King Burst Our Bubble

 
"The White House Chronicle's CFS episode aired this past weekend. The full episode will be posted on the web site at whchronicle.com. Please watch, send him a note of thanks and be on the look out for other media personalities who are bursting our bubble."

Notice of Withdrawal from CFSAC Testimony

I felt that a reason was in order as this meeting was not worth the
time and effort. The following was sent to CFSAC; HHS: Secretary
(HHS) Sebelius, Asst Secretary for Health Dr. Howard Koh, NIH Director
Francis Collins, NIAID Director Anthony Fauci, CDC Director Thomas
Frieden; my Senators and Congressional Representative. 

Jill

----------------

I will not be attending the October, 2010 CFSAC meeting and
I am relinquishing my reserved spot to speak. This meeting does not
adequately cover the important issues or reflect even the
'state of the science' in the science portion.

Last years meeting was stunning, with standing room only
crowd. Dr. Dan Peterson received a standing ovation for
his presentation of the work being accomplished by the WPI,
who had just had their collaborative paper published in Science.
We were all expecting a continuation.  This meeting is a huge step
backwards and right back to business as usual.

Since then, the work has progressed at an astonishing pace. XMRV
is known to be infectious and oncogenic, and associated with
neurologic and immune system abnormalities.  This retrovirus is the
3rd human retrovirus in addition to HIV/AIDS and HTLV (leukemia). 
Even very conservative doctors in the trenches have come out and
said that this is probably the cause.

This meeting does not reflect the seriousness and significance of this
research, and more importantly, the urgency of determining the effect
on public health.

The WPI has done more in a couple of years than HHS has done in over 20,  and it was their discovery. They were not invited. Why?

The WPI has not received any government funding for XMRV research.
Why is this? They have collaborated with well known researchers from other
federal agencies and published in prestigious journals.

Why has there been no intramural research on  XMRV at NIH or NIAID.

Why have there been no expedited epidemiological studies to determine the
incidence, prevalence and mode of transmission of the virus and mechanisms
of pathogenesis?

Why have there been no RFA's (which should have been issued immediately) for
further studies?

Why have there been no clinical trials, when there are effective antiretrovirals
available? Patients have no access to any treatment.

In fact, with federal agencies involved in these findings, why has CDC been not
only ignoring them in terms of policy but going further in the opposite direction.
Why the change to the CDC website to include psychological interventions
as treatment, and GET, which may be very harmful. Why is the CDC's 5 year
research plan still in place, given the strength and seriousness of this
research, and when IACFS/ME (the international professional organization)
had strenuously voiced objections to this plan?

Where are discussions on children? There have been no studies and no
information, and CDC is prominently placing their adverse event studies
on children on the website.

Where is the discussion on funding, which is crucial, as it has been virtually
non-existent in relative terms to other illnesses and given the morbidity and
mortality. 

Where are discussions about CFSAC recommendations, which
have gone mainly unnoticed, or discussions of how to rectify this?

Why is the Assistant Secretary not wanting to participate in or at least attend these
meetings, given the current situation and strength and significance of the
findings and serious implications to public health and safety of the blood supply. 

Patients are suffering, bedridden and some are dying. From our experience,
the illness is  progressive and people are going to continue to get worse
the longer they go without treatment. So literally spending more time on rehab
and vocational training  and cognitive issues than XMRV? You cannot
rehabilitate someone who is seriously ill.
Or to put another way, focus on
proper diagnosis, testing and treatment, which we now realistically have
the means to accomplish, the rest will somewhat take care of itself.

If this committee is not adequately fulfilling its mission and taking up the most
important issues (i.e., a retrovirus and the significance of the very likely role
it plays in this illness), then as a community we must address them elsewhere.

Sincerely,

Jill McLaughlin

World Mental Health Day

 
Lynoth makes a good point about the stigma. 
 
I've had doctors assume that I called what I had CFS because I didn't want the stigma of mental illness by calling it depression. 
 
Except that I didn't meet the diagnostic criteria for depression.  I've lived with a depressive and I know how the two diseases differ (for one example, I'd get up and do something, then go back to bed to rest, and repeat that cycle throughout the day, whereas the resident depressive would resist getting up at all, but once he'd been dragged from bed, he was up for the day).  I probably know more about the differences between CFS and depression than 99% of doctors, but they refuse to accept that because I don't have the right degree; life experience doesn't count in their world.
 
And I suspect some of the reason for doctors deeming CFS "it's all in your head" is that they know that's the fastest way to stigmatize a patient.  If the patient's not getting better, it's not because the doctor's providing the wrong treatment, it's because IAIYH and you don't want to get well.  They won't have to deal with time-consuming Disability paperwork because IAIYH means you're going to get kicked out of the Disability process at Step One. 
 
And the patient will be too embarrassed to talk to people about her CFS because it's a stigmatized mental illness, so she'll never find out that other doctors recognize it as a neuro-immune disease, thus giving her current doctor complete mind-control over her for many years.  (See Life as we know it: Power-tripping at patients' expense . That's where the real psychology comes in, because that sort of brainwashing is abusive behavior, bullying someone to let go of their own reality and accept what *you* tell them is reality, i.e., ignore those inconvenient physical symptoms and believe that the only thing wrong with you is "inappropriate illness beliefs".)

With XMRV/HGRAD, there's a whole re-education process coming for the medical profession.  They're going to have to swallow their pride and admit our problem is not IAIYH, it's another word that starts with I-A-, iatrogenic -- doctor-caused -- made worse by doctors who insist that we exercise our way out of the alleged depression, who give us inappropriate medication, who order us to keep working instead of going on Disability... if we'd stay in bed till we feel better, and only then try to increase activity in small amounts, a lot fewer of us would have years-long relapses caused by being urged to "push through" and "prove to me that you're not just lazy".
 
 
 
 

October 2010 CFIDSLink

The October edition of CFIDSLink has been sent to subscribers and posted
online at
http://www.cfids.org/archives/2006-2010-cfidslink/october-2010.asp.
Catch up on the latest news, upcoming events and new features.

The CFIDS Association of America
working to make CFS widely understood, diagnosable, curable and
preventable
 

How to brand a disease -- and sell a cure - CNN.com

 
What Big Pharma's been doing other than helping us.....
 
 


Sunday, October 10, 2010

Donating to the Whittemore Peterson Institute | Herdisms Blog

 
"More impressive is that WPI has achieved what they have without any funds from our health department. They have independently raised every penny for their work. The department of health has not given them any funding."

* * *
Why Dr. Judy can tell the truth without worrying about repercussions from CDC.
 
I'm self-employed with an editing business and donate a portion of my income to WPI.  Not because I have it to spare, but because it's an investment in the future.  If anyone's going to get me back to work full-time, it'll be WPI.
 
A few years ago, I found that I could try a Sleep Number bed for a month and return it for a full refund (every cent except the delivery fee).  It was expensive.  It was definitely well beyond my budget.  And it was worth every penny, because in the next 12 months, I worked enough additional hours over the year before to 100% pay off the bed.  That's the same way I feel about WPI -- I give whatever I can scrape together, and expect that whatever treatment they come up with will quickly have me working enough hours to pay back the investment.
 
 

Two Sides of a Disease

Two sides of a disease
By Amanda Korman, Berkshire Eagle Staff
Updated: 10/10/2010 07:40:00 AM EDT
http://www.berkshireeagle.com/ci_16299796


Sunday October 10, 2010

NEW LEBANON, N.Y. -- The problems hit her in April of last year:
severe fatigue, headaches, nausea, fevers, insomnia.

Seventh-grader Victoria Lehtonen went to her primary-care doctor and
was prescribed a short course of antibiotics, but once the medication
was used up, her symptoms returned.

Victoria proceeded to doctor after doctor with her mother, Karla, but
was diagnosed with "post-infectious fatigue syndrome" and was sent
home, still suffering.

Since several of Victoria's friends had been diagnosed with Lyme
disease after they were playing in the woods together, Karla believed
Victoria had Lyme too, even though Victoria's doctors thought
differently because she had tested negative for the disease and did
not exhibit tell-tale signs such as partial facial paralysis or a
bull's-eye rash.

Karla, who was working on her nursing degree and a master's in
biomedical sciences, started doing her own research on the illness.

"I realized she wasn't post-infectious. ... She was still running a low-grade fever, still heading into bed for days at a time," her mother said. "To me she showed signs of an active infection that was undiagnosed."

Victoria eventually tested positive for Lyme and several related
infections and has undergone treatment with doctors outside of the
Berkshires.

A year and a half after her pain began, many of Victoria's most
debilitating symptoms have improved. But the New Lebanon resident, now
13, still suffers from frequent fatigue, hasn't been able to return to
school at Berkshire Country Day in Lenox, and is being home-tutored
for two hours a day by the New Lebanon Central School District.
"I'm really tired," she said on a recent rainy afternoon. "There's no oomph."

Because of the difficulty of Victoria's case, the Lehtonens have found
themselves in the middle of a controversy about the proper diagnosis
and treatment of Lyme, an infectious disease transmitted by ticks that
feed on deer and small rodents.

Difficult to sort out'

Disagreements about the effectiveness of tests for Lyme disease and
the existence of chronic Lyme have calcified into two camps that often
are bitterly opposed.

On one side is the Infectious Disease Society of America (IDSA), a
group that puts out Lyme treatment guidelines widely referred to by
physicians. The guidelines suggest treating only in the presence of
objective symptoms and do not advise antibiotic treatment for more
than four weeks, even if symptoms persist.

On the other side are a growing number of medical professionals and
laypeople who refer to themselves as "Lyme literate" and are
associated with the International Lyme and Associated Diseases Society
(ILADS).

ILADS has published alternative guidelines that suggest Lyme can be
diagnosed from more subjective symptoms, and that a longer course of
antibiotics may be necessary to help battle what they refer to as
chronic Lyme.

Dr. Paula Aucoin, an infectious disease specialist who works at the
Berkshire Medical Group in Pittsfield, said she is an advocate of the
newest recommendations from the IDSA.

She said there is no scientific evidence that ongoing symptoms after a
maximum of four weeks of antibiotics are attributable to Lyme disease,
of which the number of reported cases in Berkshire County has more
than doubled since 2000.

"There is a subset of patients, probably a lot smaller subset than
you'd get from reading literature, that have longstanding symptoms
that are probably not due to Lyme disease," she said. "But it can be
very difficult to sort out how much Lyme is contributing, and how much
[it's] chronic fatigue or post-infection."

To patients with long-term symptoms that have no other discernible
source, Aucoin recommends pursuing treatment for improving the
symptoms. For example, if a patient suffers from chronic insomnia,
there are medications that can help alleviate trouble sleeping.

Aucoin said a diagnosis of "chronic fatigue" or "post-infection" can
be disheartening, but she said she doesn't believe there is a "chronic
Lyme" or that a prescription for long-term antibiotics is helpful.

"It would be a lot simpler to give 12 months of antibiotics, but I
don't think that's effective," she said.

Aucoin said she has seen significant toxicity and infection from
long-term access catheters that administer the antibiotic --
Doxycycline, for instance -- as well as side effects from the
antibiotics themselves. There also is a concern for the development of
antibiotic-resistant bacteria.

Some patients improve, but some, uncommonly, become chronically
disabled, she said. "And that's why people look hard for alternatives,
and why people are drawn to Lyme disease specialists who feel very
strongly that they're offering benefit."

Seeking outside help

The Lehtonens said they could not find a doctor in Columbia or
Berkshire counties who would treat Victoria for Lyme based on the
ILADS guidelines, which say the disease can be diagnosed clinically
instead of by a set of objective symptoms.

Aware that Lyme left untreated can result in more severe symptoms,
Karla made an appointment with Dr. Kenneth Liegner, a Lyme specialist
in Westchester County, N.Y.

Liegner, an internist, has fought for Lyme disease treatment reform
since the early 1990s and has called the IDSA's standard of care
"medical neglect."

"When I first started treating, I treated by the book, but it became
very clear those regiments weren't working," Liegner said. "It was a
gradual process from observing my patients that it began to dawn on me
that the treatment we were giving wasn't treating the infection."

Liegner said he treats many patients like Victoria, who come to him
after being refused treatment by other doctors.

Like some other high-profile doctors who treat for chronic Lyme,
Liegner has come under criticism for his practices; in 2000 the New
York Office of Professional Medical Conduct initiated an investigation
of him and other doctors for their treatment practices, but no action
was taken.

"This has not been a field for the faint of heart," Liegner said. "But
on the other hand, it's very rewarding and gratifying to help these
people who have no place to turn."

New laws

The climate of the Lyme debate has begun to shift in the Northeast and
elsewhere. Legal action against "Lyme literate" doctors such as
Liegner has come under fire, resulting in laws protecting their right
to treat patients via the alternative guidelines.

Gov. Deval Patrick recently signed into law a protection for
Massachusetts doctors to treat Lyme disease with antibiotics for
longer than the four weeks recommended by the IDSA. California,
Connecticut and Rhode Island all have recently passed similar laws.

The Massachusetts legislation, which went into effect July 1, allows
doctors to diagnose Lyme when it presents "other acute and chronic
signs of symptoms of Lyme disease as determined by the treating
physician," even if the illness doesn't present itself along the
criteria of the national Centers for Disease Control and Prevention.

This new legislation comes at a time when Massachusetts is seeing an
increase in the disease. Statewide, there were more than three times
as many cases reported in 2009 than in 2000, according to the
Massachusetts Department of Public Health. Lyme disease cases in
Berkshire County rose from 51 in 2000 to 105 in 2009.

In Columbia County, N.Y., an area known for its high incidence of the
disease, numbers are on the downturn, although still high. A total of
357 cases were reported in 2009, compared with 595 in 2000.

In Columbia County, N.Y., an area known for its high incidence of the
disease, numbers are on the downturn, although still high. A total of
357 cases were reported in 2009, compared with 595 in 2000.

Columbia County's population is about half of Berkshire County's, and
some have attributed the high rate of Lyme to a large deer population.

57 pills a day

While health officials in Columbia County are happy about the lower
incidence of Lyme, Victoria Lehtonen doesn't get to share in the good
news -- she's bored with only being able to play computer games and
lie around.

Simply put, she's tired of being tired.

Victoria is now seeing a doctor in Florida who studies Bartonella and
Babesiosis, lesser-known infections related to Lyme disease.

Victoria takes 57 pills a day, including numerous supplements, Chinese
herbals, antimalarials, antibiotics and probiotics.

"She's on higher doses of almost every supplement," Karla said.
"Normally she'd be taking a Flintstone."

But things are getting better. Victoria now lives in a way that was
out of the question a year ago. She can hang out with friends or go to
salsa lessons, even if she can dance for only 15 minutes before
feeling so worn down that she has to quit.

And as the medical community works through how to solve cases such as
hers, she's also waiting.

"I just want them to figure it out," she said. "I want it to just go away."

To reach Amanda Korman:
akorman@berkshireeagle.com

(413) 496-6243
 
Lyme disease at a glance

ORIGINS

Lyme is the most common tick-borne illness in North America and
Europe. The disease derives its name from Lyme, Conn., where the full
spectrum of the illness was first described in 1975.


CONTROVERSY

There are significant disagreements about the diagnosis and treatment
of Lyme disease:


Infectious Disease Society of America (IDSA): "The great majority" of
people with Lyme develop a bull's-eye rash.

International Lyme and Associated Diseases Society (ILADS): Fewer than
50 percent of people with Lyme will recall a rash.

-

IDSA: 95 percent of people treated early with 10 to 28 days of oral
antibiotics are cured.

ILADS: There is more than a 40 percent relapse rate in patients
treated with a short course of antibiotics.

-
IDSA: People who continue to have symptoms after the short course of
antibiotics likely:

Never had Lyme.

Had another infection simultaneously and were treated only for Lyme.

Have contracted a new illness unrelated to but with similar symptoms to Lyme.

Have again been bitten by a tick carrying Lyme.

ILADS: Persistent symptoms likely are caused by an ongoing Lyme infection.

-

IDSA: Long-term antibiotic therapy may be dangerous.

ILADS: The consequences of untreated chronic Lyme outweigh potential
consequences of long-term antibiotic therapy.

-

Sources: IDSA, ILADS, Mayo Clinic
* * *
This is the thing that doesn't register with some people who discount CFS -- if you're running a persistent low-grade fever, you have an infection of some sort.  It's not psychiatric.