Saturday, December 13, 2008

Medically Unexplained?

Ellen Goudsmit observes:

“...only the laziest scientist would continue to refer to CFS and IBS as 'medically unexplained.' What do they want? A single cause? OK, there is a single cause for salmonella and norovirus. Many other diseases have a more complicated aetiology. Think of breast cancer. In one person, genetics might play an important role. In others, oestrogen. What caused mine? The consultant told me that he didn't know. Does that make breast cancer 'medically unexplained'?”

This is a battle we’ve been fighting for 25 years. The initial batch of patients in that epidemic came in relating their symptoms to a flu-like illness. There’s a big difference between “a virus we don’t have a test for yet” and “medically unexplained”.

In prior epidemics, doctors and nurses were felled at work and tucked into beds in their own hospitals. There was adequate evidence – hospital charts hung at the foot of their beds – that they had some sort of virus. There was evidence that CFS patients were immune in later polio epidemics. But in those days, without as much technology as we have today, doctors trusted their eyes and ears, what they saw and what the patient told them, instead of insisting that a patient couldn’t have a virus unless there was a positive blood test to prove it.

Words of Wisdom

Tequila and Salt

This should probably be taped
to your bathroom mirror
where one could read it every day.
You may not realize it,
but it's 100% true.

1. There are at least two people in this world that you would die for.

2. At least 15 people in this world love you in some way.

3. The only reason anyone would ever hate you is because they want to be just like you.

4. A smile from you can bring happiness to anyone, even if they don't like you.

5. Every night, SOMEONE thinks about you before they go to sleep.

6. You mean the world to someone.

7. You are special and unique.

8. Someone that you don't even know exists loves you.

9. When you make the biggest mistake ever, something good comes from it.

10. When you think the world has turned its back on you take another look.

11. Always remember the compliments you received. Forget about the rude remarks.

And always remember....

when life hands you Lemons,

ask for Tequila and Salt and call me over!

Good friends are like stars........

You don't always see them,

But you know they are always there.

"Whenever God Closes One Door He Always Opens Another, Even Though Sometimes It's Hell in the Hallway"

Friday, December 12, 2008

UCSF Virus Center scheduled to open in 2009

University of California San Francisco will be launching a center for
viral diagnosis and discovery in early 2009. The goal is to hunt down more causes of pneumonia, encephalitis and other lethal and disabling conditions whose origins too often baffle doctors, even as their patients are slipping away. Requests for analysis are only made through doctors or research projects, not the general public.

Virologist Joe DeRisi, inventor of the Viro-Chip from
Carmichael, California, will be part of the project. His Viro-Chip,
a microarray that holds genetic snippets of thousands of viruses
on one glass slide, will be one of the key sleuthing tools.
(Note: It would be great if Dr. Peterson could share some of his
over 2000 tissue samples of M. E./CFS patients)

Highlights from article that appeared in The Sacramento Bee
(web link below):

"Our plan is: Make it open to everybody," from doctors with a single
troubling case to large research efforts such as the state-run
California Enchephalitis Project, said Dr. Charles Chiu, an infectious disease
specialist who'll head the center.

"About 20 to 30 percent of the time we can't make a diagnosis in
pneumonia," said Chiu. "The situation is even worse for other severe
diseases like encephalitis," an inflammation of the brain whose
cause is unknown in more than 60 percent of cases.
Those mysteries are "unbelievably frustrating to the family,
the patients . the physicians," said Dr. Carol Glaser, who is
involved in a government-funded effort to detect more causes
of encephalitis.
"If you don't know what causes it, how can you figure out how
to treat it or prevent it?" she said.

Eliminating a wide range of possible causes can protect a
desperately ill person from undergoing risky diagnostic tests
or taking unneeded drugs.

Once the new center is up and running, perhaps in February
or March, Chiu expects to hear from more doctors struggling
to understand unusual cases, the ones where patients keeps
getting sicker and all the standard diagnostic tests come
back negative.

Still, said virologist DeRisi, "We don't want members of the public
sending us weird stuff. We want them to go to their doctor
and have the doctor send us stuff. "

Steven Du Pre
Poetry website:
"By words the mind is winged." Aristophanes
Website for National Alliance for Myalgic Encephalomyelitis:

Thursday, December 11, 2008

Where are they now?

Patients are asking "Where are they now?"

Hello Ladies and Germs...

RESCIND has been getting a lot of email since my interview with Cort
Johnson. In a lot of those emails, I was asked if I knew how some of
the other old timers (advocates) were doing. The one person who was
asked about the most was Marc Iverson.

All I could really answer was that I heard he was on the "A Fair Name"
committee and the last I heard from him before that was his
resignation letter that was posted to Co-Cure.

So we at RESCIND have decided to try to keep a history of the
"movement" to educate newcomers to the disease, M.E., and it's
politics. We have published Marc's resignation letter on the RESCIND
site ( so people can get an idea of why so many
long time advocates and patients have a chip on their shoulder when it
comes to the CFIDS Association of America. Marc quit the CAA for much
of the same reasons that the members of RESCIND and so many others did
years before him.

I would also like to suggest to our latest chronicler of M.E., Mr.
Cort Johnson, that he do an interview with Marc Iverson since we had
gotten so many emails asking about Marc. Maybe the start of a "where
are they now?" series...

And, as always, if you haven't signed the petition to recognize M.E.
in the U.S., please do so. I would love to present it to our new
president with 10,000 signatures!


Tom Hennessy, jr.
and President
9812 Falls Road
Suite #114-270
Potomac, Maryland 20854.

Obama wants your Questions

Sam writes:
A while back, I posted a link to two places on USA President-elect
Obama's web site where you can give him your ideas and experiences.

Now he wants your questions.

How about asking what he is going to do to get myalgic
encephalomyelitis recognized? Or asking what he is going to do to get
biomedical research for it? Or what he is going to do to enact
justice for people who have been abused and mistreated simply for
having a disease?

I searched for myalgic encephalomyelitis and chronic fatigue syndrome
and found no hits. Zero.

How about we ask a few informed and dignified questions?

Myalgic encephalomyelitis denialists are knowingly causing further
suffering and death by opposing biomedical research on this serious
infectious disease. Do you care about the world?

Cytokines and Fibromyalgia

Plasma Cytokine Fluctuations Over Time in Healthy Controls and
Patients with Fibromyalgia.

Exp Biol Med (Maywood). 2008 Dec 8. [Epub ahead of print]

Togo F, Natelson BH, Adler GH, Ottenweller JE, Goldenberg DL, Struzik
ZR, Yamamoto Y.

Department of Work Stress Control; Japan National Institute of
Occupational Safety and Health.

PMID: 19064941

We examined the pattern of cytokine secretion across the 24 hr day
for women with widespread pain and tenderness having the diagnosis of
fibromyalgia (FM) and matched healthy controls.

Subjects were given time to habituate to being in a clinical research
laboratory environment and then were sampled for cytokines without
their being disturbed for a 24 hr period including an 8 hr sleep period.

Cytokine levels were uniformly low but characterized by bursts of
secretion. Bursting occurred either in singlets or in doublets with a
range from 88 to 131 min between doublets. There was an element of
synchronization of these bursts with most occurring at the beginning
of sampling. FM patients showed a shift to increased IL-10 in the
night-time compared to controls. The relation between this
anti-inflammatory cytokine to the pro-inflammatory cytokines studied
also differed between groups: FM patients showed a reduced ratio of
IL-10 burst amplitude to that of pro-inflammatory cytokines IL-1beta,
IL-8, and TNF-alpha.

We interpret this to indicate a skew away from the normal balance
favoring pro-inflammatory cytokines in controls toward one favoring
an anti-inflammatory response in FM. These changes toward
anti-inflammatory predominance in FM may explain their common
complaint of disturbed sleep because these cytokines are known to
disrupt sleep.

YouTube videos about CFS creativity

A member of my local support group sends along these links:

I came across this video testimonial and I thought that many of you could relate to the creativity that "WE have to have" just to manage thru one of "our normal" type days from "our" cocoons ....I don't mean society's type of Normal, either..

Mr Scott Simon, host of NPR's Weekend Edition, discusses, "CFS: The Human Toll". Simon is a close friend with SeaBiscuit author,and CFS sufferer, Laura Hillenbrand; this is the 1st clip of 2 by Scott Simon.

Simon spoke about the enormous personal toll that CFS takes on his good friend, Hillebrand, as well as countless other Americans, also afflicted with CFS.

TURN your Volume UP HIGH....he speaks softly....done in 2 parts:

I am thinking these 2 videos might be good to share with othersthat we know so they might understand that we are just part ofthe MANY out there that have this disease and how it effects our lives....

* * *
She's right; it does take a lot of creativity to get through the day. For example, I have a sturdy tray that can go through the dishwasher, so if I need to take the vegetables back to bed to do the peeling and chopping lying down, I can do that. I also have a stool in the kitchen so I can sit to chop or cook.

Wednesday, December 10, 2008

CFIDSLink Dec.08: CFS News, Research, Tips & Video

In a message dated 12/10/2008 1:45:00 P.M. Pacific Standard Time, writes:
Dear Friend,
Let's face it: the nation's economic crisis is on my mind, and likely yours too. And unlike other industries, there will be no rescue package passed by Congress to make sure CFS research and education continue in these tough economic times. That means it's up to us, the community of people who care most about returning CFS patients to healthy, satisfying lives, to sustain forward progress. . . [Read on: "From the Desk of Kim McCleary"]
Research Matters
accelerate-labelLargest-Ever CFS Research Initiative Announced
The successful completion of the million-dollar research campaign is enabling the CFIDS Association to institute a revitalized research program, called the Accelerate CFS Research Initiative. A key component of the initiative is our grants program, and last week we announced details about six grants just awarded to research teams with expertise in a wide range of fields, including bioinformatics, microbiology, immunology and physics. The research we're funding covers a broad scope of investigations aimed at yielding the discovery of biomarkers and methods for early detection, objective diagnosis and effective treatment of CFS.
Get the full story >> (in PDF format)

More research stories:
Researcher Dikoma Shungu Continues Brain Studies with Association Grant
Study Explores Sleepiness and Fatigue in CFS
Advocacy Counts
Video: Testimony from Congressional Briefing on video-briefingCFS

Earlier this year the CFIDS Association, with the help of Senator Tom Harkin (D-IA), hosted a congressional briefing on CFS in the Capitol building. The briefing featured an introduction by Association president & CEO Kim McCleary and presentations from Anthony Komaroff, MD, Lucinda Bateman, MD, and NPR's Scott Simon, who is a close friend of Seabiscuit author and CFS patient Laura Hillenbrand. Here are links to video segments for each of these presentations.
Get the full story >>
Treatment Matters
Print-and-Go Info on Managing CFS Symptoms
The CFIDS Association has worked diligently to help educate medical professionals about CFS. Here's a downloadable page from the CFS Toolkit for Health Care Professionals that you can print and take with you on your next visit to the doctor.
Get the full story >> (in PDF format)

More treatment stories:
Top Tips for CFS Troubles
News & Notes
CFIDS Association Gets 4 Stars from Charity Navigator
America's premier independent charity evaluator, Charity Navigator, recently awarded the CFIDS Association its highest rating for fiscal responsibility and financial management.
IACFS/ME Conference in Reno this March
The 9th International IACFS/ME Research and Clinical Conference will be held March 12 - 15 at the Peppermill Resort in Reno, Nevada. The first day will offer presentations for patients, caregivers and family members on topics that impact them directly. The rest of the conference gathers researchers and medical professionals to discuss the latest advances in virology, genetics, pediatrics, brain functioning, epidemiology, treatment and assessment. Click here to learn more about the conference or to register.

Back to top

You Matter
Real Stories, Real Gifts
The work the CFIDS Association does is in direct proportion to the amount of support we receive from people in the CFS community--people from all walks of life who care deeply about seeing an end to this illness. Here, five people from the CFS community share their thoughts on the illness and the reasons they give to the cause.
Get the full story >>

Do It: A Defining Moment

Screenwriter, journalist and editor Zachary Sklar--best known as co-screenwriter (with Oliver Stone) of the Oscar-nominated film JFK--has been living with CFS for many years. In this essay he describes a defining moment in his journey with the illness. It was first published in the Association's special 20 Years of Making CFS History commemorative edition.
Get the full story >>
More personal stories:
"Dreams at Stake" by Laurel Bertrand
Your donations enable the CFIDS Association to fund CFS research, fight for better health policy, educate medical professionals and help families and individuals dealing with this debilitating illness. Donate now to support this work.
Karen C in California
Writer - Editor/Proofreader - Freelance Paralegal

CFSFacts -- dispelling the myths and providing the facts
Now Blogging at

News from Dr. Bruno

New Jersey  Philanthropists Honored for Helping Forgotten Polio Survivors.

Sweta and Yaz Shah received the 2008 Dr. David Bodian Memorial Award at Englewood Hospital and Medical Center.

The Shahs, Cresskill residents and business persons best known as the owners of Hudson Drug of Cresskill, were honored as "unsung heroes" of polio survivors for the donation for three years of their 5,000 square-foot building at 97 Engle Street, Englewood, to house The Post-Polio Institute.  The gift has been valued at $425,000.  The Bodian Award ceremony on Wednesday, November 19, was attended by Shahs' family and friends, hospital officials and Post-Polio Institute patients from New Jersey and New York.

The Post-Polio Institute is now located in the completely renovated space at 97 Engle Street in Englewood.  "I am so grateful to Sweta and Yaz Shah for giving polio survivors a place where they can have their Post-Polio Sequelae (PPS) be treated in safety and comfort," said Dr. Bruno, who is also Chairperson of The International Centre for Post-Polio Education and Research, also housed in the Shah's building.  "Most polio survivors are fearful of hospital's because of the abuse they experienced 60 years ago when they were young and being treated for polio. The Shahs' warmth of spirit has translated into warmth of place, creating an atmosphere at The Post-Polio Institute that is like a friendly home, not a hospital or doctor's office."

The Post-Polio Institute is the world's foremost PPS treatment and research center, the only center whose services and facilities were specifically designed to care for polio survivors with PPS are the unexpected mid-life symptoms experienced by polio survivors: Disabling fatigue, muscle weakness, muscle and joint pain, sleep disorders, difficulty in swallowing and breathing, and heightened sensitivity to pain, cold and anesthesia.  "There are still nearly two-million North American survivors of the polio epidemics of fifty years ago," said Dr. Richard Bruno, Director of The Post-Polio Institute.  "Most Americans -- and even most doctors -- have forgotten polio survivors exist, let alone that they are developing PPS."

Dr. Bruno, international leader and a pioneer in the treatment of PPS, presented the award named for Dr. David Bodian, an unsung polio researcher who worked behind the scenes guiding Dr. Jonas Salk so that he could develop the polio vaccine.


Monday, December 8, 2008

CBT and GET in ME: a boundary issue

Cognitive Behaviour Therapy and Graded Exercise Therapy in ME : a boundary issue
Greg and Linda Crowhurst
(may be reposted)

"I could see the sense in graded exercise and how it could help someone to comeback from an illness and aid in their recovery but unfortunately with ME this treatment does not work and just sets you back. " (Person with severe ME)

"Giving GET and CBT to people with ME is like trying to prescribe treatment without first investigating the disease –– madness ! We need proper biomedical research to find out the cause(s) of this illness and to investigate fully what it does to the body.. GET and CBT have been found to be at best unhelpful to those with ME at worse, harmful." (Person with severe ME)

"Having been a career in professional management, (before forced to give up work through ill health), as part of management development, I touched on CBT within the psychology of training so knew a little about its application/benefit. Not a cynic, I felt I was sufficiently self aware however to recognise that CBT was not the answer to the "very physical" symptoms with which I battle as part of M.E. and felt it was not the best form of treatment for me. (Person with severe ME)

"I have not been offered CBT. My GP doesn't believe it will make any difference as I have no "faulty illness beliefs", am well motivated, and have adjusted my life to working within my (very limited) energy levels. "(Person with severe ME)

*All quotes are from (Crowhurst G 2005) 25% Group Submission to the Gibson Inquiry

CBT and GET are constantly prescribed as universal treatments for ME, however they are not universal treatments, they may be treatments for CF and they may be appropriate rehabilitative techniques or tools to aid individual people to cope with chronic illness, however they can never be considered a treatment for ME and all the time they are, they act as smokescreen to delay and avoid awareness of the real issue, the need for genuine treatment based on biomedical fact and biomedical research.

The use of CBT and GET as 'treatments' for ME are enabled because ME has been subtly and cleverly downgraded by introducing the term "CFS" as synonymous with ME. This is the beginning of the Great Lie that leads away from genuine testing, treatment and prognosis of this devastating illness towards the persecution and denial of extremely ill, severely disabled people, who may die as a result of this disease.

The true reality of the nature of ME is denied by choosing to neglect the boundary separation issue between Chronic Fatigue Syndrome (CFS), which encompasses a whole host of disparate fatigue-related, possible mental health conditions and Myalgic Encephalomyelitis (ME), a specific World Health Organization recognized neurological disease.

Under the ongoing influence of powerful vested interests, ME has become inextricably tangled with Chronic Fatigue Syndrome to such an extent that truth seems false and genuine need is misinterpreted as intentional dependency :
The true number of symptoms in ME is constantly denied or ignored.
* The physical tortuous reality of neurological ME is constantly denied, diminished, negated and ultimately neglected .
* People are constantly not treated fairly, with equality. Because their true reality is denied, their equality is denied right across the board and they are disempowered. They do not have an equal voice, they are not considered equally valid in what they have to say and their complaints and demands for fair treatment are twisted and made into "deviance" and "non-compliance".
Equating ME with CFS, imposes wrong interpretations upon the ME sufferer's symptoms, life experience and needs. If you accept that the person with CFS who can or may get better from CBT and GET is the same as the person with neurological ME who cannot, it is easy to assume that the person with ME is :
*not trying hard enough;
*is malingering;
*wants to be ill;
*is a burden on society and deserves to be persecuted and exposed to extreme and often hostile red tape and procedures, which undermine the genuine need for benefits, medical treatment, biomedical consultancy, understanding and compassion.

The argument that both CBT and GET are simply not being done properly by the host of ME sufferers who have tried it and been damaged by it, is, disturbingly, being used to advocate greater training of therapists and greater therapeutic input, by some of the biggest ME Charities, a persuasive stance perhaps; but a stance which is starkly at odds with its own ME membership: people with ME, over and over again, in surveys say they do not want CBT or GET. There is no evidence that CBT and GET works in ME (as opposed to "CFS") and there is no valid justification for NICE to advocate them so strongly.

Powerful vested interests, however, have much to gain.

In theory, according to the NICE guidelines currently being challenged through Judicial Review, patients can "choose" whether or not to participate or not in a CBT/GET programme, however it should never be left up to very ill patients, who may have severe cognitive difficulties and other severe symptoms, to have to refuse what is wrongly deemed as "treatment".

ME sufferers may not have the cognitive ability to explain their reasoning or the physical and emotional energy to stand up for themselves.

The reasons why it is so dangerous to offer these rehabilitative techniques to patients with ME is precisely because they are not being treated as aids to recovery but solutions to a problem and treatment in themselves.

They also imply a false assumption that you can, will and should get well / better, if only you follow the regime; yet as the Chief Medical Officer (2002) stated, anyone severely affected for more than 5 years has a poor prognosis of recovery .

The only way that anyone could possibly accept that CBT and GET are suitable treatments for ME is :
*by neglecting to separate CFS from ME
*by omitting or denying the true physical nature of ME
*by diminishing the biomedical need of the person with ME.

The deciding moment

Choosing to accept that CBT and GET are a treatment for ME is a definitive choice, for it is to adopt a posture that could easily end up persecuting and victimizing this already marginalized and denied group of people. It is to accept the inappropriate psychiatric paradigm; whether intentionally, through unawareness, or by default.

Particularly vulnerable are those new to the illness who are given a CFS label and do not even know if they have ME or not and are therefore exposed to these psychosocial treatments, whether appropriate or not. Desperate to get better they may try them and place themselves at great risk of deterioration.

Thousands around the world, newly ill with ME, may not understand the dangers of following a CBT/GET pathway and will be more likely to trust and accept it is appropriate without questioning.

The continued offering of Cognitive Behavioural Therapy and Graded Exercise Treatment as frontline treatments for people with ME has to be stopped, and the toxic "CFS" label must be dropped once and for all from "ME" !

The experience of Severe ME sufferers who have experienced CBT and GET :
Taken from both the EAME/25% Group Norfolk/Survey (Crowhurst & Crowhurst 2007 ( ) and the Gibson Survey for 25% Group (Crowhurst 2005 ( )
these are the voices and experiences of those who best know the awful truth about CBT and GET:

o My GP gave me a leaflet his practice had received from Simon Wessley's unit at Kings College Hospital in London. I read it and said that the condition it described had no similarities to what I was experiencing. He suggested I go for an initial assessment anyway which I did –– at great cost to my health. On arrival I was horrified to find that the 'CFS' unit was in the psychiatric department KCH and at that time, security doors protected it. I was also concerned that I was attending a 'CFS' unit since this label did not describe my complaint. It came as a shock to be seen by a psychiatrist who displayed little or no understanding of what I told him. My symptoms, most of which are included in the Canadian Criteria, were dismissed or ignored. At the end of the consultation he suggested a course of CBT and said I should take up exercise and get some hobbies. Six months later I was called for a course of CBT which I declined. The therapist became aggressive and defensive when I explained why.

o I was an in-patient in a psychiatric ward of a London hospital. I was the only patient who did not have a mental health problem, and although my CBT therapist had had plenty of experience of working with M.E. patients, I was the first to be admitted as an in-patient. I received both CBT and GET, but the graded exercise seemed to be given priority. I worked with a physiotherapist, who also had no experience of M.E. I began to seriously deteriorate, and 4 months in, suffered a major relapse. I had a kind of undiagnosed 'stroke', collapsed, and became incapable of looking after myself. When I went to the hospital I could walk 100 yd., feed, wash and dress myself. When I left I could not weight bear at all, had no leg muscles to speak of, and needed two people to transfer me on and off the toilet and in and out of bed. I had little use of my hands and was totally bed bound. I could not tolerate sitting upright against the pillows, conversation was beyond me, and I could barely manage to feed myself by picking up food in my hands -- cutlery was out of the question. Nine years later I have improved, but I'm still bed bound.

o It ruins lives. If you do not respond to CBT and Graded Activity you are given up on. The medical profession, and lay persons, think that ME is just pain and fatigue and we are all depressed, even in the face of evidence to the contrary. The only treatments offered aim to correct these symptoms, and any other symptoms are classed as psychosomatic. Because of this serious, debilitating and potentially life threatening symptoms are left untreated causing unnecessary suffering.

o If you do not respond to Graded Activity, the Benefits Agency seem to think you are either malingering or depressed and benefits are refused. The Agency, and in particular their Medical Examiners, seem oblivious to the problems and symptoms of severe ME and all seem under the impression that everyone with ME recovers in under 5 years. If you are still ill after that it either isn't ME or you are mentally or behaviourally ill in some way.

o after I came home from the hospital where I received CBT/GET therapy, a physio came to see me once a week. The first one was absolutely appalling, and used to drag me up off the bed and hold me upright, even though I was too ill to cope with this, and my body was collapsing under me.. It was a 'fight' really, with her believing that if I wasn't allowed to sit down, the muscles in my legs would improve, and I would gradually begin to weight-bear

o "We wish of course that we could recover from the illness, and resume a normal life, with a little graded exercise/activity and a positive mindset. It would be the perfect solution without having to resort to drugs and the risk of side effects. But it simply doesn't work for those correctly diagnosed with ME and in some cases can actually make matters even worse"

o "CBT in particular is understandably appealing to the DoH as it's an apparently cheap option to deal with an expensive problem. But it appears to be a red herring dressed up as a cure by those who seek to deny the physical reality of the illness"

o I participated in Graded Exercise therapy via the 'National M.E Centre', Romford, Essex.This lead to a relapse, at home, and made me unable to sit upright for 1 year due to pressure in my head, and chest pain. I then relapsed and ended up in my local NHS Hospital in a cardiac care unit.

o Graded Exercise Therapy worsened me dramatically and I have no doubt had been a large factor in my being severely affected after 20 years. Cognitive Behavioural Therapy- this did not make me worse but I feel was completely inappropriate and didn't have any relevance to my day to day life.

o "I've had CBT and GET. Both of these made me extremely worse for a number of years and from which I am still recovering from and which has still affected me."

o Have had CBT before I moved here and the exertion, traveling and questioning was exhausting and made me worse.

o "Common sense helps with pacing and graded exercise etc. CBT and GET I don't think are helpful, as often any course is very draining and I cannot concentrate anyway

o ME and CFS should be considered as separate illnesses when treatments are being considered. For example, I am sure there are instances where graded exercise could be very helpful in CFS whereas I know, as a severe ME sufferer, that in my case it would do far more harm than good

o Graded exercise don't work.

o Please research severe ME (bedridden patients) and please stop putting money into psychological interventions (CBT, Activity Programs, Behavioural Models) –– research the physical aspects of the disease, it's cause, management and treatment instead.

If we are not listening to the voice of the ME sufferer, then who are we listening to?

Who is benefiting?

Certainly not the very ill people who have the serious neurological chronic disease: Myalgic Encephalomyelitis.

* * *

The usual reminder that in the US, CDC has made CFS the "official" name for ME, whereas in the British Commonwealth, they are differentiated.

Patients with any chronic illness can become depressed by the limitations, pain, and loss of Quality of Life. If you think you really do have some depression, then, by all means, go get some counseling and anti-depressants to help with that, but don’t expect them to be a cure-all because they won’t do anything for the medical problems. All they’ll do is help you cope with the major lifestyle changes required.

The easiest way to differentiate between pure depression and pure CFS (or ME, if you prefer) is to exercise. If you return exhilarated, then it’s depression; if you return exhausted and continue to feel bad the next day, then it’s CFS.

I do recommend pacing (google up Ellen Goudsmit’s excellent articles on the subject), where you alternate a little activity with at least an equal amount of rest.

Working against a total ban on incandescent lights

The US is also planning to ban incandescents, so please adapt this letter and send it to your legislators (and don't forget President-elect Obama!)

From: Evelyne Muller

Subject: URGENT/Please help prevent a total ban on incandescent lights

Dear Friend

On 8 December, Energy Ministers of the Member States of the European Union will be taking a first vote on a Directive which sets out regulations to totally prohibit the sale of incandescent light bulbs in the EU, starting in September 2009 with the higher wattage bulbs e.g. 100 watts. The matter will then pass to the European Parliament where MEPs will have the opportunity to suggest amendments and finally vote, possibly in January 2009.

I have genuine concern about climate change and the need to meet CO2 reduction targets. However, there are many ways to do this and adversely affecting the health and participation in society of people with sensory disabilities should not be deemed acceptable. The draft legislation contains no exemptions for people with a range of conditions including autism, migraine, lupus, ME and skin conditions, some of whom have found that existing low-energy light bulbs trigger and exacerbate their symptoms. People like myself are in the vulnerable position of not being able to scientifically prove this, so we have been campaigning in Europe for more research to be carried out before incandescent light bulbs are totally banned.

Now is the vital moment to write again to your MEPs and MP with the up to date information that I have included in the suggested pro-forma letter below. If you have time to personalise it, particularly explaining your own symptoms, please do so. Please note that there are attachments to this email which it would be helpful if you could forward on to the MEPs/MP. In most areas of the UK, we are entitled to write to at least 6 MEPs, who cover one area. Very good details of who to write to are available on or by telephone to Parliamentary Enquiries on 0207 2193000.

Thank you very much indeed for your support in the past, both in writing letters and for financial donations. Financial contributions are much appreciated as, being electro-sensitive, I have had to pay my assistant for all computer work over the last 21 months of the campaign. Cheques are payable to "Right to Light" which now has a Committee of Management.

If you are able to forward this email to anyone else you think would be responsive or interested, please do so. That would be extremely helpful.

All the very best
Evelyne Muller, Co-ordinator, Right to Light

Suggested format for letter to MEPs/MP



Despite my genuine concerns about climate change, I think it is extremely irresponsible that the Draft Lighting Directive, very shortly to be voted on by EU Member States, does not contain exemptions for people with recognised light-sensitive health conditions.

Organisations including the National Autism Society, Migraine Action Association, Lupus UK, the Skin Care Campaign, XP Support Group and Right to Light have received regular complaints that the low-energy light bulbs that people have tried trigger and severely exacerbate their symptoms. The draft regulations, however, phase out all incandescent bulbs, starting in September 2009, assuming everyone can use double envelope CFLs or low-energy halogen bulbs. Incandescent bulbs need to remain available so that these light-sensitive people can use them in their homes and so that they can participate in the electrically-lit world outside their homes.

I would ask you to please take the time to consider this complex issue. Imagine that it is you that has such a disabling condition - how would your life at home and in the outside environment be affected? How would you prove it? Remember that light bulbs are everywhere in the built environment, including the homes of friends and family. The Department of the Environment (DEFRA) wrote to a constituent on 18 June 2007 "No member of society will be disadvantaged by the gradual change over".

As you will see from the organisations' joint response (attached), to the Draft Directive, it is clear that it does not meet the EU's impact assessment legal requirements, that"health, safety and the environment shall not be adversely affected."

The EU commissioned the SCENIHR report to review the scientific literature on light-sensitivity and this report frequently comments on the lack of good quality primary research. It states that"There is a need for additional experimental and epidemiological studies before final conclusions can be drawn regarding several of the conditions mentioned in the mandate."

These conditions include migraine, autism, ME and electro-sensitivity - migraine alone affects 70 million people in Europe - see attached Interim Review of the SCENIHR report.

Sensory disability is complex and not just a matter of the intensity of bright light. When using incandescent bulbs, people with some of these conditions require normal levels of lighting eg 40, 60 and 100 watt bulbs.

The attached joint response also refers to the rights of persons with disabilities under the UN Convention, which the EU has signed and which is part of the EU's Disability Action Plan. If you read the attachments carefully you will understand the view that the Draft Directive is inconsistent and incompatible with the disability policy of the European Union. I very much hope that low-energy lighting will eventually be available for everyone to use. However, the EU should not now take advantage of the fact that ordinary citizens cannot scientifically prove why they get symptoms from these bulbs. Therefore, the EU should ensure that proper clinical trials are carried out to establish the true extent of the problems and to demonstrate that there are alternative low-energy bulbs that can be tolerated by all groups. This research should include the testing of double-envelope CFLs on people with skin conditions where the SCENIHR says that these bulbs "largely mitigate the risk of symptoms". Conditions like XP and lupus are extremely serious and can result in fatalities (see attached photograph).

I therefore urge you to please ensure that people with sensory disabilities are not left as virtual prisoners in their inadequately lit homes. Please protect their needs and rights and ensure that this proposed irresponsible and premature ban on incandescent light bulbs does not become law. Do you want Europe where only the fittest are entitled to basic human rights?

Thank you very much for considering these important issues.

Yours sincerely

Sunday, December 7, 2008

Shopping for a Cause

Dear Friends,

When shopping online for the holiday season, you can help research at the same time. The mall at has over 700 participating stores to choose from and each purchase will donate a small percentage of the total to The National CFIDS Foundation which we put toward funding research.

Another online representative is offering a much larger percentage of your total purchase to go toward research. Avon is known for their beauty products but also carry jewelry, apparel, accessories and gifts and gadgets. One Avon representative is offering 15% toward charity for each purchase. If one goes to the fundraising website: and enters the fundraiser code of 700026, a hefty 15% of the purchase will go toward funding research without one penny held back!

The National CFIDS Foundation recently funded one large study (already announced) and will soon fund another huge one that is aimed at the causation of CFIDS/ME instead of merely one of the mechanisms of the disease. Help us help you when you shop online.Our thanks in advance for helping!

Gail Kansky

President, National CFIDS Foundation, Inc., 103 Aletha Rd., Needham, MA 02492-3931 781-449-3535

Write about Disability (and get paid for it!)


Payment is made upon publication and varies from $10 to $125. Kaleidoscope Magazine has a creative focus that examines the experiences of disability through literature and the fine arts. Unique to the field of disability studies, this award-winning publication expresses the experiences of disability from the perspective of individuals, families, healthcare professionals, and society as a whole.

CFS is no longer CFS and it was never ME

CFS is no longer CFS, and it was never ME:
The document can also be found in a read and print friendly version here:
Earlier documents in the same area that I have produced are: - CFS is no longer CFS, and it was never ME - Resolution in order to make cohorts less heterogeneous - Use the Canadian criteria 2003 for CFS in the USA
/Kasper Ezelius, Örebro, Sweden,
CFS is no longer CFS, and it was never ME
Kasper Ezelius, M.Sc., Örebro, Sweden, 5 December 2008
The Centres for Disease Control and Prevention in the USA has adopted a more including criterion for chronic fatigue syndrome which is important to be aware of when reading scientific papers. It is important to know that the new criteria is so much "loosened up" that it encompasses 2,5% of the general population instead of around 0,4% as with the earlier criteria. How to stratify and group patients in future research is proposed. The use of disjoint sets of patients is encouraged.
CDC Centres for Disease Control and Prevention, USA. CFS Chronic Fatigue Syndrome et al. et alii (Latin) = and others ME Myalgic Encephalomyelitis
ME research
The Centres for Disease Control and Prevention in the USA (CDC) has adopted the Reeves (et al.) empirical definition of CFS from 2005 [6], after having used the Fukuda definition since 1994 [5]. The Fukuda definition was already not good for research into Myalgic Encephalomyelitis (ME) because it did not have important ME symptoms as mandatory. It was e.g. possible to have patients with depression (without ME) fulfilling the Fukuda definition.
The CDC states that ME is not the same thing as chronic fatigue syndrome [3]. This is correct because "the father of ME", Melvin Ramsay from England, was never member of the group that created the first CFS criterion 1988 for CDC (Holmes et al.)[4]. Ramsays description of ME included muscle phenomena, circulatory impairment and cerebral dysfunction [1]. These things are not required for any of the CDC CFS definitions [4][5][6].
The last years very little biomedical research has been made on ME with a strict ME definition, but ME patients have hoped that the use of the Fukuda definition in research, if used with care, indeed collects sufficient ME patients to get statistical significant results. Nevertheless, one must be aware that it is possible to produce a study with patients fulfilling the Fukuda definition without anyone having ME. E.g. it is possible for some people with depression to fulfil the Fukuda definition.
In my experience, all patients with ME complain about cognitive problems, temperature regulatory problems and post exertional malaise exceeding 24 h. Most ME patients have sleep dysfunction and intolerances to pharmaceutical drugs. Their cognitive function worsens with upright posture. These symptoms are not required for any of the CDC CFS criteria [4][5][6].
The Canadian definition requires for example post exertional malaise exceeding 24 h and sleep dysfunction, but circulatory impairment is not a mandatory symptom, making it different from the Ramsay definition [1].
Biomedical research into ME at risk
The situation has changed to the worse for ME research since 2005 when Reeves and others from CDC created a so called empiric definition for CFS. The problem is that it collects a more vast group of patients. With the Fukuda criterion the estimated prevalence is 0,4%, but with the Reeves definition the prevalence is 2,5% [7]. The Fukuda criterion already defines a heterogeneous group of patients, and one would wish that a more strict criteria is used, but instead one expands the group further so the CFS Fukuda patients are in minority, only representing 15% of the CFS Reeves group. Leonard Jason has criticized the CFS-Reeves criterion [8][9]. Below is a list of research that already have been made with the new loose and fuzzy CFS Reeves definition. The list has been compiled by Tom Kindlon. Many people are not aware the fact that these articles are based upon a different definition, because many of the articles have obscured what kind of criteria that has been used. Science should be transparent and clear, but unfortunately articles have been accepted despite it requires quite some work in order to figure out which criteria that was used. Suggestions for future research
Many ME patients around the globe are waiting for research that will lead to meaningful results, an understanding of the pathophysiology and pathogenesis, and ultimately a cure. The research is based on the very important decision of how to group the patients, therefore this shall not be performed with heedlessness.
The expansion of the CFS concept is a severe disappointment for patients with ME that are hoping that biomedical research will progress. Scientists are urged not to use the CFS-Reeves definition, instead using the limited resources in order to advance ME research.
It would be an advantage if it would be possible to use exclusive sets of patients (disjoint sets). For the already heterogeneous CFS-Fukuda set, it would be a benefit if one could exclude the ME-Ramsay (or ME/CFS-Canada) from the group, thus making it less heterogeneous. The excluded ME-patients shall then form a separate group. In order to keep comparability to previous research, one should indeed also have a group based on the original CFS-Fukuda definition, during a time period of around 10 years.
My wish is that scientists will group patients as follows in the future:
1) Patients fulfilling ME-Ramsay [1], ME Hyde [10] or ME/CFS-Canada [2].
2) Patients fulfilling CFS-Fukuda [5] and do not fit into group 1.
3) Patients from both group 1 and 2 above, i.e. patients fulfilling CFS-Fukuda.
The severity of ME can vary greatly, therefore it is strongly recommended that data is stratified upon severity.
This solution would be helpful to the patients that have ME, but also to the patients that do not have ME but still CFS. A win-win situation for both group of patients, because it will most likely speed up biomedical research.
[1] A. Melvin Ramsay. Myalgic Encephalomyelitis and Postviral Fatigue States: The Sage of Royal Free disease. 2nd edition, Gower Medical Publishing, London 1988.
[2] Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. Bruce M. Carruthers, et alii. 2005, ISBN 0-7890-227-9, Haworth Medical Press Inc.
[3] CDC citation: "The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS."
[4] Chronic Fatigue Syndrome: A Working Case Definition. Holmes et alii. Ann Intern Med. 1988; 108:387-389.
[5] CDC Fukuda 1994 CFS Case Definition
[6] Reeves WC, et alii. Chronic fatigue syndrome--a clinically empirical approach to its definition and study. BMC Med. 2005 Dec 15;3:19.
[7] Prevalence of chronic fatigue syndrome in metropolitan, urban, and rural Georgia. William C Reeves, et alii. Population Health Metrics 2007, 5:5.
[8] Leonard A. Jason, Judith A. Richman. How Science Can Stigmatize: The Case of Chronic Fatigue Syndrome. Journal of Chronic Fatigue Syndrome, Vol. 14(4), 2007.
[9] Problems with the New CDC CFS Prevalence Estimate. Leonard Jason, Ph.D., DePaul University, Co-Cure 10 Jun 2007
[10] Definition of ME by Byron Marshall Hyde, Nightingale Research Foundation, Canada.
List of articles based upon the CDC Reeves 2005 CFS criteria
Source Tom Kindlon ( ).
1. Chronic Fatigue Syndrome -- A clinically empirical approach to its definition and study. William C. Reeves et alii. BMC Medicine Vol 3, 19. December 15, 2005.
2. Cognitive Dysfunction Relates to Subjective Report of Mental Fatigue in Patients with Chronic Fatigue Syndrome. Lucile Capuron, et alii. Neuropsychopharmacology. 2006 Aug;31(8):1777-84.
3. Coping styles in people with chronic fatigue syndrome identified from the general population of Wichita, KS. Nater UM, et alii. J Psychosom Res. 2006 Jun;60(6):567-573.
4. Glucocorticoid receptor polymorphisms and haplotypes associated with chronic fatigue syndrome. Rajeevan MS, et alii. Genes Brain Behav. 2006 Jun 1.
5. Early Adverse Experience and Risk for Chronic Fatigue Syndrome: Results From a Population-Based Study. Christine Heim, et alii. Arch Gen Psychiatry. 2006;63:1258-1266.
6. Sleep characteristics of persons with chronic fatigue syndrome and non-fatigued controls: results from a population-based study. William C Reeves, et alii. BMC Neurol. 2006 Nov 16;6:41.
7. The challenge of integrating disparate high-content data: epidemiological, clinical and laboratory data collected during an in-hospital study of chronic fatigue syndrome. Vernon SD, Reeves WC. Pharmacogenomics. 2006 Apr;7(3):345-54. Abstract: The paper above was used to define CFS for the gene expression studies published in Pharmacogenomics. These Pharmacogenomics papers are the papers presented below.
8. The postgenomic era and complex disease. J A Witkowski. Pharmacogenomics, Apr 2006, Vol. 7, No. 3, Pages 341-343.
9. An empirical delineation of the heterogeneity of chronic unexplained fatigue in women. Utéé Vollmer-Conna, et alii. Pharmacogenomics, Apr 2006, Vol. 7, No. 3, Pages 355-364.
10. The validity of an empirical delineation of heterogeneity in chronic unexplained fatigue. Eric Aslakson, et alii. Pharmacogenomics, Apr 2006, Vol. 7, No. 3, Pages 365-373.
11. Gene expression profile of empirically delineated classes of unexplained chronic fatigue. Liran Carmel, et alii. Pharmacogenomics, Apr 2006, Vol. 7, No. 3, Pages 375-386.
12. Polymorphisms in genes regulating the HPA axis associated with empirically delineated classes of unexplained chronic fatigue. Alicia K Smith, et alii. Pharmacogenomics, Apr 2006, Vol. 7, No. 3, Pages 387-394.
13. Gene expression correlates of unexplained fatigue. Toni Whistler, et alii. Pharmacogenomics, Apr 2006, Vol. 7, No. 3, Pages 395-405.
14. Identifying illness parameters in fatiguing syndromes using classical projection methods. Gordon Broderick, et alii. Pharmacogenomics, Apr 2006, Vol. 7, No. 3, Pages 407-419.
15. Exploration of statistical dependence between illness parameters using the entropy correlation coefficient. R Cameron Craddock, et alii. Pharmacogenomics, Apr 2006, Vol. 7, No. 3, Pages 421-428.
16. Gene expression profile exploration of a large dataset on chronic fatigue syndrome. Hong Fang, et alii. Pharmacogenomics, Apr 2006, Vol. 7, No. 3, Pages 429-440.
17. Exploration of the gene expression correlates of chronic unexplained fatigue using factor analysis. Jennifer Fostel, et alii. Pharmacogenomics, Apr 2006, Vol. 7, No. 3, Pages 441-454.
18. Linear data mining the Wichita clinical matrix suggests sleep and allostatic load involvement in chronic fatigue syndrome. Brian M Gurbaxani, et alii. Pharmacogenomics, Apr 2006, Vol. 7, No. 3, Pages 455-465.
19. Chronic fatigue syndrome and high allostatic load. Elizabeth M Maloney, et alii. Pharmacogenomics, Apr 2006, Vol. 7, No. 3, Pages 467-473.
20. Combinations of single nucleotide polymorphisms in neuroendocrine effector and receptor genes predict chronic fatigue syndrome. Benjamin N Goertzel, et alii. Pharmacogenomics, Apr 2006, Vol. 7, No. 3, Pages 475-483.
21. Allostatic load is associated with symptoms in chronic fatigue syndrome patients. Benjamin N Goertzel, et alii. Pharmacogenomics, Apr 2006, Vol. 7, No. 3, Pages 485-494.
22. Improved prediction of treatment response using microarrays and existing biological knowledge. Simon M Lin, et alii. Pharmacogenomics, Apr 2006, Vol. 7, No. 3, Pages 495-501.

* * *
The usual caveat, that since 1988, it has been virtually impossible to get an ME diagnosis in the US because CDC mandated the name change to CFS. My initial diagnosis was Post-Viral Syndrome, which certainly sounds a lot worse than Chronic Fatigue Syndrome, but a few months later, my doctor was told that continuing to call it PVS would mean insurance would not pay for treatment, he'd have to call it CFS henceforth.

I know my symptoms line up with traditional ME, but thanks to CDC, most people think that the only problem I have is that I'm tired (or lazy) (or maybe just crazy).

Lifestyle Management Program

British Society of Rehabilitation Medicine (RSRM) NewsletterMay 2008Page 12

Evaluation of a lifestyle management programme in the functional abilities and fatigue for chronic fatigue syndrome (CFS/ME) patients
T Gaber, J Priest, Bolton PCT, Bolton

Background: Bolton and Bury CFS/ME specialist service was established in2004 as part of a UK wide £8.5million investment to improve the care and equity of service provision forCFS/ME patients.

Aim: To evaluate the impact a lifestyle management programme has had on thefunctional abilities andseverity of fatigue.Method: The lifestyle management programme is delivered as a group orindividual basis. The groupprogramme is delivered over six fortnightly sessions of two hours. Theprogramme integrated the principlesof promoting graded activities (exercise) and cognitive behavioural therapyin an informal setting. Functionaloutcomes were measured before and after the programme using SF36 andseverity of fatigue usingChalder’s fatigue scale. Patients’ subjective views following the programmewere also documented.

Results: Full data was available for 70 out of 112 participants in theprogramme. 49 were females. Themean (SD) of SF36 and Chalder’s scale before the programme was 15.7 (4.8)and 8.8 (3.1) respectively andafter the programme was 15.7 (5.4) and 6.1 (4.4). Using the T test, therewas no significant differencebetween the mean values pre and post intervention. In general, theparticipants praised the programme andfelt that it helped them to cope with their symptoms.

Conclusion: Most patients felt that the lifestyle management programmes improved their ability to cope with their disability. However, the programme failed to achieve either functional improvement or reduction in fatigue in CFS/ME patients. Further evaluation of the role of such management programmes for CFS/ME patients is needed.