Thursday, December 31, 2009

Using Social Bookmarking Sites to Reach a Wider Audience

Although posting to listservs and groups spreads knowledge among specific
groups and types of people, there are other ways to bring the issues to the
public arena thus better informing doctors, scientists and the general
public. Social book marking sites are easy to sign-up for making many of the
magazine and newspaper articles and even research papers on CFS and related
issues are only a click away from a wider audience. By all means join
Facebook, Twitter, My Space or Yahoo Buzz, but also consider joining some or
all of the listings below. Most require some level of basic information, but
your profile can be as bare bones or complete as you wish to make public:

http://www.stumbleupon.com/
http://digg.com/
http://www.mixx.com/
http://www.reddit.com/
http://www.wikio.com/
http://www.newsvine.com/
http://www.sphere.com/
http://www.propeller.com/
http://delicious.com/

Science and research oriented:

http://www.citeulike.org/
http://technorati.com/
http://www.mendeley.com/
http://www.connotea.org/

Book Review by Ellen Goudsmit

Book review: www.amazon.co.uk

Fernie, B and Murphy, G. Coping Better With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Cognitive Behaviour Therapy for CFS/ME (Paperback) London: Karnac. 2009. £12.23 (as of 31st December 2009).


I am a Health Psychologist who has specialised in CFS and ME for over 15 years. I abstract every scientific publication on both disorders for the Melvin Ramsay Archive, and completed a PhD on ME and post-viral syndrome. I am a Fellow of the British Psychological Society (i.e. quite senior). As a clinically trained psychologist, I know about CBT; what it can do and what it can't. I personally believe that CBT is a very helpful way of dealing with anxiety, fear, depression and other emotional problems associated with having a medical disorder. I have no problems recommending CBT when appropriate, but it has to be based on a sound understanding of the conditions, an up-to-date knowledge of the research and above all, respect for the patient.

This book shows respect for the patient but little understanding of the research (hence physiological changes are linked solely to emotions, not evidence of viral activity or metabolic abnormalities), and the authors refer to deconditioning, shown quite a long time ago as playing no significant role in CFS. The theory underpinning this version of CBT is a mix of the CBT model ('CFS is largely a result of maladaptive beliefs, a lack of activity and the physiological results of stress') and something new which can be found on pages 129 and 134. For example, the authors state "the brain and body may have become primed to have the same maladaptive response to any stressor and that maladaptive response has become a conditioned (learned) response." It's this which interested me as a psychologist. The idea, as far as I understand it, is that we, or our brains, learn to associate stress (e.g. divorce) and the symptoms of CFS. Other stressors would then be able elicit 'CFS' through generalization. Except, it doesn't work that way. Although similar stressors to the original one can elicit a lesser response, at least in dogs, the stimulus has to be presented at certain intervals, otherwise the response will extinguish. In real life, many patients relapse and remit, or get worse. So point 1 is that CFS is not a lesser response and this requires an explanation. Then there is point 2; the issue of discrimination. The authors suggest any stressor can trigger 'CFS'. The following is a classic study in psychology. Rats given a sweet solution and X-ray felt sick, associating the sweetness with the nausea. They did not show distress when later tested with a strong light or noise. And there are other studies which demonstrate that one can learn an association between X and Y, but that exposure to Z won't have an effect. The stimuli (stressors) have to be similar to the original conditioned one, so with respect to CFS, the stressor would have to be significant, e.g. after a divorce, one would lose one's job, experience the death of a loved one, be beaten up etc, all within a period of 3-6 months. One can imagine these as capable of producing severe distress and ill-health. Missing the bus or the fridge breaking down should not elicit a conditioned response. We do not expect these 'hassles' to lead to severe symptoms. (If there were a lot of them, occurring one after the other for many months, then meditation, and a version of CBT with a different emphasis would be more appropriate).

I think CFS specialists might have noticed if the majority of patients have a history of major negative life events preceding and subsequent to onset. Instead, the psychological literature has focused on unhelpful beliefs and inactivity. But beliefs and inactivity do not cause enteroviral infections (Chia and Chia 2008), intolerance to alcohol or swollen glands.

In my view, the book isn't really about CFS but about chronic stress. The case histories give a clue. A man caught a bug and went back to work too quickly, hence a discussion about perfectionistic personality and stress. I consider that reasonable but would I diagnose that as CFS? No. A lady had a messy divorce which is very stressful, and reports fatigue, aches and pains, and tender glands. Again, is that CFS or chronic stress? Will CBT help them? Yes, it probably would. Will this version of CBt help genuine CFS? I doubt it. The research has shown only modest effects and that's only really for fatigue.

Who might benefit from this book? A 12 year old with CFS. Adults with anxiety and stress due to overload. Yes, stress can cause fatigue and all the other symptoms described in the book. Conversely, this is not a guide for people with acute onset, post-viral ME, with neurological symptoms, nausea and muscle weakness, all closely related to minimal exertion and other factors such as the menstrual cycle, changes in the weather etc. A much better intro to CBT is the guide edited by Sue Pemberton. The chapter on sleep is fine, the section on energy capsules describes pacing well, and the advice on dealing with worrying is sound. But the activity diary is poor without a space for symptoms so one can see connections. As for everyone getting deconditioned due to prolonged bed rest, isn't that an urban myth?

There's some unintentional humour. Having obviously seen a few individuals who need very basic, thought-by-thought advice, the book provides a list of activities to wind down. It goes like this (p. 43):
Record worries in worry book;
Read;
Wash and clean teeth;
Relaxation/meditation;
Switch off lights;
Go to bed.

24 hours later, I wondered if the authors would include this in a book for patients with cancer or MS?

The above illustrates my main issue. There are touches of basic, sensible advice intertwined with an overly simplistic view of the illness-as-lived.

To conclude: there's good news and bad news. The good news is that the book is very short (135 pages). The bad news is that it isn't the best guide about coping with classic CFS and ME. There are better books. Yes, CBT is useful for some with ME and CFS. But I'm not sure this version is one I'd personally recommend.

Conflict of Interest: I have ME myself.

http://www.amazon.co.uk/Chronic-Fatigue-Syndrome-Myalgic-Encephalomyelitis/dp/1855755378/ref=pd_rhf_p_t_1



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

Dr. Ellen M. Goudsmit


Available via Skype: ellen.goudsmit

For information on ME and CFS, see:
http://freespace.virgin.net/david.axford/melist.htm  
 


Wednesday, December 30, 2009

"Functional" or "psychosomatic" symptoms

 
One of the major difficulties that repeatedly muddies both the bio and
psychosocial research are unsubstantiated claims by biopsychosocial
ideological adherents that common symptoms of an infectious process are
depression instead. At this time there is no objective means of proving this
opinion.

The failure to acknowledge the substantial body of biomedical research
objectively showing an infectious process in well-defined patient groups
with CFS and/or Myalgic Encephalomyleitis  (ICD-10 G93.3) doesn't change the
factual evidence. It may however mislead other researchers or clinicians who
may not have the time or inclination to review the actual biomedical
literature or dismiss it because it does not fit with their preconceived and
unproven opinion. The history of medicine is full of theories that medical
technological advances render amusing or irrelevant at best.

It should be noted that feelings of worthlessness or excessive or
inappropriate guilt and loss of interest or pleasure are not generally
present in CFS and/or ME patients although required for a diagnoses of major
depressive disorder. As CFS expert and psychologist Dr. Leonard Jason has
noted repeatedly, CFS patients are full of plans for such a time when their
symptoms abate.
Common sense tells us that sadness or depression related to
loss of health is a normal part of the disease experience not proof that no
disease process exists. Also, loss of energy and exercise intolerance are
not remotely related and are only confused when doctors (and psychiatrists
are MDs) substitute their personal opinion for the actual experience of the
patient.
It should also be noted that the DSM requires that any symptoms
that can be attributed to a medical disease cannot be used to make a
diagnosis of  a major depressive episode or psychosomatic disorder for that
matter. Refusal to believe an explanation that would diminish the
researchers standing as an "expert" is not the same thing as unexplained.

Although psychology and psychiatry have the potential to have much to offer
patients with organic diseases in the way of adjunctive therapies,
unfortunately at this point in time the DSM remains a manual of  opinion and
association.

It should also be noted that the names of the person or persons who wrote
this letter were not made publicly available. Whether it indicates that they
are unwilling to take full public responsibility for their opinion is
speculative.


Neuro Endocrinol
Lett.<javascript:AL_get(this,%20'jour',%20'Neuro%20Endocrinol%20Lett.');>2009
Nov 25;30(5). [Epub ahead of print]
"Functional" or "psychosomatic" symptoms, e.g. a flu-like malaise, aches and
pain and fatigue, are major features of major and in particular of
melancholic depression: time to amend the diagnostic criteria for major
depression and.

[No authors listed]

FULL TITLE: "Functional" or "psychosomatic" symptoms, e.g. a flu-like
malaise, aches and pain and fatigue, are major features of major and in
particular of melancholic depression: time to amend the diagnostic criteria
for major depression and the rating scales that measure severity of illness.


BACKGROUND: Major depression is characterized by multifarious symptoms and
symptoms clusters, such as the melancholic and anxiety symptom clusters.
There is a strong comorbidity and a biological similarity between major
depression and myalgic encephalomyelitis / chronic fatigue syndrome
(ME/CFS).
 
AIM: The aim of the present study was to examine "psychosomatic"
symptoms reminiscent of ME/CFS in major depression. Toward this end, we
examined the 12-item Fibromyalgia and Chronic Fatigue Syndrome Rating (FF)
Scale and the Hamilton Depression Rating Scale (HDRS) in 103 major depressed
patients by means of multivariate pattern recognition methods.

RESULTS: Our findings support the existence of two factors, i.e. a fatigue
and somatic (F& S) factor, i.e aches and pain, muscular tension,
fatigue, concentration difficulties, failing memory, irritability, irritable
bowel, headache, and a subjective experience of infection; and a depression
factor, i.e. sadness, irritability, sleep disorders, autonomic symptoms, and
a subjective experience of infection. Cluster analysis performed on the 12
FF items found two different clusters, which were separated by highly
significant differences in the F& S items, the most significant being a
subjective experience of infection, aches and pain, muscular tension,
fatigue, concentration difficulties and failing memory. Multivariate
analyses showed that the differences between both clusters were
quantitatively, and not qualitatively, and reflected the severity of the
F& S dimension. There was a strong association between the F& S
symptoms and melancholia and chronic depression. Treatment resistant
depression was characterized by higher scores on the depression factor
score. There was a strong correlation between the HDRS score and the FF
items, fatigue, a subjective experience of infection, and sadness.

CONCLUSIONS: Our findings show that F& S symptoms are a major feature of
depression and largely predict severity of illness, and chronic and
melancholic depression. It is concluded that the diagnostic criteria of
depression and melancholia and rating scales to measure severity of illness
should be modified to include the F& S symptom profile.

PMID: 20035251 [PubMed - as supplied by publisher]

* * *
"loss of energy and exercise intolerance are not remotely related and are only confused when doctors (and psychiatrists are MDs) substitute their personal opinion for the actual experience of the patient."
 
My medical records are full of statements where the doctor wrote down what he wanted me to say to support his preferred diagnosis rather than what I actually told him.
 
 

Tuesday, December 29, 2009

UNR virus discovery could lead to new drugs, treatment

 

Advances in Pain Relief

Hi,

Since chronic pain is a fact of life for anyone with CFS &/or FM,
this article may provide some useful ideas for treatments.
This article is in Medscape, which is free to sign up for. There are
no newsletters or other email, and no 3rd-party emails, that
automatically come with sign-up. You can choose to have specific
newsletters sent (such as one on pain control), simply by checking
off the proper box when signing up, or when reading thru the article.

I have only copied page one (of six) below. Further pages briefly
discuss specific drugs, devices and treatments that can help with pain relief.


Chronic Pain Relief: New Treatments
New advances in drugs and technology mean there are now better
solutions for chronic pain relief.
http://www.webmd.com/pain-management/advances-in-chronic-pain-treatment/treatment  


By Jeanie Lerche Davis
WebMD Feature
Reviewed by Brunilda Nazario, MD

If you're living with chronic pain, here's important news. Today's
pain specialists have sophisticated new treatments -- from effective
drugs to implants and electrical stimulation -- to provide chronic
pain relief. There's much that can be done to tame the beast.

These advances have emerged in the past several years, as researchers
have gained a greater understanding of chronic pain and how it
develops. The origins of chronic pain are all too familiar: sports
injuries, back injuries, car accidents -- or health conditions like
migraines, diabetes, arthritis, shingles, and cancer.

At times, however, there is no obvious cause of the chronic pain, no
trauma or injury people can point to as a source of their chronic
pain problem -- which has been frustrating for both patients and their doctors.

The Roots of Chronic Pain -- and Relief

In past generations, people often heard that chronic pain was "all in
their heads," says Rollin M. Gallagher, MD, MPH, director of pain
management at the Philadelphia VA Medical Center.

Today's pain specialists understand how the sensation of pain occurs
-- how the nervous system, including the spinal cord, interacts with
the brain to create that sensation, Gallagher says.

Insights into the neurotransmitter system -- the chemical messengers
that pass nerve signals -- have opened the door for important new
modes of chronic pain relief, he explains. In recent years,
scientists have learned how to manipulate those chemical messengers
to change the way they interact with the brain's signals.

That's led to use of antidepressants and other drugs that work with
specific brain chemicals that affect emotions, and help with
perception of pain. "We now have a whole new host of medications that
are very effective" for chronic pain relief, Gallagher tells WebMD.

And with advances in MRI imaging, researchers can clearly demonstrate
that the changes are very real in the brain,
he says. "We can show
exactly where the sensation of pain is occurring in the brain when it
is activated by stimuli. We can see the effects of pain on emotion --
and emotion on pain."

There's new understanding, too, of a process called "central
sensitization," says Kwai-Tung Chan, MD, a pain specialist and
professor of physical medicine and rehabilitation at Baylor College
of Medicine in Houston. "If initial pain from an injury is not
adequately treated, those pain signals are sent repeatedly -- which
leads to changes in the central nervous system, making it more and
more sensitive. Over time, even the gentlest touch can become very painful."

Pain Specialists: Experts in Chronic Pain Relief

With these insights, pain specialists now prescribe treatments that
attack moderate-to-severe chronic pain from different angles --
innovative drugs, targeted nerve-zapping procedures, and drug pumps
that deliver strong painkillers to the nerve root. Doctors also
endorse the use of psychotherapy, relaxation techniques and
alternative therapies, supported by growing evidence of the mind-body
connection in chronic pain relief.
 


In defense of the Public Option

This is it, folks.  The house bill includes the public option, the senate bill does not, and as soon as they're back from Christmas break, they will be working on a compromise version.
 
For a million people with CFS, as well as millions of other people with pre-existing conditions, that public option is a vital necessity.  Insurance companies won't insure us now, they're not going to want to insure us later, either.
 
If you do nothing else this week, go to house.gov and senate.gov and contact your congressperson and 2 senators about keeping the public option in the compromise bill.  It may be life-or-death for some of us.
 
Here are Dr. Mary Schweitzer's defenses, which you are welcome to crib for your letters.
 
Tell them when you first got sick, when you stopped working (were you fired, put on leave, or did you quit?), what symptoms make it impossible for you to work.  If you're paying for health insurance, tell them what percentage of your income goes to the premiums (one proposal is for subsidies for anyone paying more than 10% ... I pay about 40% of what I earn, and get essentially nothing in return).  If your policy was stripped down after you used it, tell them how unfairly you're treated.  If you were refused insurance entirely, tell them that.  If you've gotten sicker because you can't get treatment due to finances, tell them! 
 
They have to hear all the horror stories from our side, and not just the claims of the other side that we're simply too cheap to pay for insurance or too lazy to get jobs -- recent statistic, 20% of Californians have no insurance and more than half of those have full-time jobs.  I know someone who had a full-time job, whose employer spent a year looking for someone willing to insure -- at any price -- an employee with multiple pre-existing conditions.  Every insurance company turned him down.  The other side won't tell that story; they've argued he should've gone to a different insurance company (turned down by all the ones they named) or that he just has to cough up the price quoted (no price was quoted because no one wanted to sell him a policy).  They can't (or won't) get their heads around it that some people are flat-out uninsurable under the current system.
 
* * *
 
It's all well and good to say you don't want the government running anything, but right now we have way too many people with no health care options at all - the burden is much greater on young people, who increasingly can't get paid through their employment, and don't make enough to afford private health insurance on their own.

If you get sick in your twenties you're really fried, because you won't have enough quarters of work to qualify for Social Security Disability, and you're too old to be carried on your parents' insurance.

That's because the wealthy and very upper class are increasingly buying boutique plans that treat you like a prince - at the same time companies are scaling back on benefits, and small businesses are totally on the ropes over this.

I think that bears repeating - this current system is really tough on small businesses, because of the economies of scale.

Study after study, going back decades, comes to the same conclusion: The higher your income, the better your benefits package. The lower your income today, the greater the chances you have no employer-based benefits at all - and if so, you can't afford an individual plan.

Without a public option, these people will have no place to turn.

Medicare definitely has its problems, but try to take it away from old geezers. They know what their lives would be like without it.

My daughter-in-law is tied to a job she hates because it has the family's health insurance package, and both she and my son have significant pre-existing conditions. So employer-tied insurance has left labor immobile at a time when we badly need labor mobility.

No, I wouldn't want England's system either - although except for ME/CFS, which is done poorly over here too, they tell me it's not so bad. But those so-called "NICE" guidelines were developed with the help of American insurance companies, which are already trying them out here - that's how the catastrophe with Lyme Disease happened.

We already are paying for a very overpriced health care system for the uninsured - have you been to an Emergency Room in the past decade? The one I am supposed to go to, geographically, is a total mess - every day is like Saturday night used to be.

Treating colds and ear infections in an ER is just stupid, because it's a lot more expensive than a clinic would be. And it interferes with the treatment of the people who come to the ER because of a real medical emergency.

These people can't pay ER prices, so WE end up paying - through higher "hospital costs" and through higher premiums. But that ends up taxing the middle class who get sick - wouldn't it be better to spread the cost around?

Plus people with no insurance put off care until their condition is really bad - and therefore really expensive to treat - and we pick up the tab on that, too.

In 1993, when we were sparring over whether the First Lady should also be the First Lobbyist (my own vote was "no"), both Taiwan and Switzerland had decided they, too, needed to overhaul their health systems. But they both commissioned studies, which were very revealing on the strengths and weaknesses of those of different countries. Only after examining the different options - and publicly debating them - did they make their choices. Switzerland seems more pleased with the results - Taiwan underestimated their costs - but under both systems, nobody goes without coverage, and they both rank higher than we do in terms of results.

Our media should have been doing that - showing us ALL the options, not just Canada - instead of interviewing each other, and keeping score with the polls as if they were playing the spread on a football game.

Because the real problem here is we pay far more per person for health care than any other country, yet we rank 39th.

I think a system like Germany's would have been best for us - It is dual, public/private (you can buy a better plan if you want).

They have a lot of problems - they inherited a huge mess when they had to reabsorb East Germany into their country, and their constitution (which we pretty much wrote after WWII), says they can't deny immigration, and they have a lot of Turkish immigrants. That mirrors many of our problems. And interns in Germany have to spend a year doing home visits - imagine that! Home visits! - so they have a better understanding of the relationship between illness and environment.

How could we pay for this? Well, first of all, FICA does not just cost 7 1/2% - employers have to match it. It's really 15% off the top of labor costs, and the burden is greater the lower your income and the smaller the business (because there are economies of scale).

Then I assume you know that after you make roughly $150,000, the rest you make doesn't go into FICA or Medicare (the Medicare cut-off is a bit higher, but it's the same range).So Paris Hilton pays less than 1% of her income to FICA, whereas my West Virginia relatives who make ends meet only by hunting and otherwise doing a lot of economic activities outside the market - the full freight of 15% is taken off their income.
 
 
 
 

Sunday, December 27, 2009

The public option

Health care change has now passed both the House and the Senate, but in two different versions (not unusual). 

Critical for many of us is that the House version included a public option, whereas the Senate version does not.

I am lucky - I was accepted for Social Security Disability, and I am on Medicare.  I also have good private insurance from my husband's job.  What this bill would do would be to extend the same privilege I have, to everybody else out there, without having to pass these demeaning tests to "prove" we are somehow worthy of the nation's attention.

Of course, many tests specific to our disease aren't covered by either, thanks to the CDC's insistence that such testing is "inappropriate" for patients with a CFS diagnosis, but there are many other health problems besides The Disease that remain unaddressed because patients have not the means to seek treatment.  And perhaps after research shows relationships among XMRV, "CFS", and such tests that currently require cash as natural killer cell function, the Rnase-L defect, T cell ratios, and many different viruses and microbes.  Some day these tests, and treatment for the resulting conditions, WILL be approved by CDC, and then a public health plan would have to cover it.   

For our many friends with The Disease who have no health insurance whatsoever, and not enough income to buy it no matter what the price, please write your Congressman and Senators, asking that the public option be preserved in the final version of the bill.

As always, you will find your own Senators by going to http://www.senate.gov and following the directions; you can find your Congressman by going to http://www.house.gov and following the directions.

Thank you.

Mary M. Schweitzer, Ph.D.
 





Immunological Similarities between Cancer and Chronic Fatigue Syndrome

Immunological Similarities between Cancer and Chronic Fatigue
Syndrome: The Common Link to Fatigue?

Journal: Anticancer Res. 2009 Nov;29(11):4717-26.

Meeus M, Mistiaen W, Lambrecht L, Nijs J.

Affiliation: Artesis Hogeschool Antwerpen (AHA), Department of Health
Sciences, Division of Musculoskeletal Physiotherapy, Van
Aertselaerstraat 31, 2170 Merksem, Belgium. jo.nijs@vub.ac.be or
jo.nijs@artesis.be.

NLM Citation: PMID: 20032425


Cancer and chronic fatigue syndrome (CFS) are both characterised by
fatigue and severe disability. Besides fatigue, certain aspects of
immune dysfunctions appear to be present in both illnesses. In this
regard, a literature review of overlapping immune dysfunctions in CFS
and cancer is provided. Special emphasis is given to the relationship
between immune dysfunctions and fatigue.

Abnormalities in ribonuclease (RNase) L and hyperactivation of
nuclear factor kappa beta (NF-kappaB) are present in CFS and in
prostate cancer. Malfunctioning of natural killer (NK) cells has long
been recognised as an important factor in the development and
reoccurrence of cancer, and has been documented repeatedly in CFS
patients. The dysregulation of the RNase L pathway, hyperactive
NF-kappaB leading to disturbed apoptotic mechanisms and oxidative
stress or excessive nitric oxide, and low NK activity may play a role
in the two diseases and in the physiopathology of the common symptom fatigue.

However, in cancer the relation between the immune dysfunctions and
fatigue has been poorly studied. Immunological abnormalities to such
as a dysregulated RNase L pathway, hyperactive NF-kappaB, increased
oxidative stress and reduced NK cytotoxicity, among others, are
present in both diseases. These anomalies may be part of the
physiopathology of some of the common complaints, such as fatigue.
Further studies to confirm the hypotheses given here are warranted.
 


Friday, December 25, 2009

CFS is *still* being disparaged even with XMRV proof

Dr. Bell wrote:
I am  amazed how mainstream medicine is so fixed in their biases against
ME/CFS that  the concept of XMRV actually causing the illness almost doesn't
enter their  consciousness. Dr. Reeves, head of the CDC project on CFS has
made only one  comment to my knowledge, that he "doubted" this would turn out.
What a  comment. Why not "Interesting." or "we will see."

Hillary Johnson made some interesting observations. First,  "Why  wasn't
everyone demanding dozens of replicative tests on the prostate cancer 
findings?" Yet when CFS is implicated we will need twenty studies which  replicate
the first. And if some poor studies do not find XMRV, they will be  given
preferential weight to studies that actually find  it.
 
Clearly the solution to this is for our existing CFS experts to decree that huge numbers of CFS patients have been "misdiagnosed" all these years, and what we really had was XAND ... except that because there was no test for XMRV until now, we got mislabelled.
 
Decades ago, I got the CFS diagnosis and scorn, while another young lady in our church got an MS diagnosis and more help than she really needed.  It was not the one who quit her job immediately who was called "lazy" -- it was the one who was struggling to continue working against the odds.  She was not called "faker" as I was, even when she quickly amended her divorce paperwork to request full lifetime alimony for her purely self-reported symptoms, while I continued to work and support myself (not only then but up until now).  I was diagnosed first, but as soon as she got her diagnosis, I was the one called "copy cat", for symptoms that I'd had for over a year before she suddenly claimed to have any symptoms.
 
I asked my doctor why she got one diagnosis and I got a different one, with almost identical symptoms.  She had double vision, which is seen in MS but not in CFS, and I had something that's seen in CFS but not in MS.  That was the extent of the difference between respect and insults: double vision.  Her best friend was a nurse, and I am certain that she discussed it with the nurse before going to a doctor; her friend may have even told her to mention double vision to make sure she didn't get the diagnosis that would be disparaged.  How do you disprove that the patient has double vision?  (Well, except maybe by following the patient to the parking lot and noting that she drove herself there.)
 
When I realized that "CFS" means nothing to most people, but "Chronic Fatigue Syndrome" produces "I have that, too", I changed my explanation of what I have to "something very similar to MS" -- people can get their heads around that -- and slowly work my way around to the CFS/Chronic Fatigue Syndrome terminology if they appear interested in how I'm affected.  That seemed to work better than spelling out CFIDS/Chronic Fatigue and Immune Dysfunction Syndrome ... as soon as I got to the IDS part, people ran away, thinking I had something like AIDS, was contagious, and they'd get it from touching me.  (It may have been a better name, but I didn't want to live in isolation, so I went back to the lesser of two evils.)
 
Now, last laugh, I *do* have "something like AIDS", a retrovirus.  If we drop the "formerly known as CFS" part entirely, maybe we'll finally get some respect for the yeoman's duty we've all done, the courage we've shown over the years in battling our illness *and* public perception, far in excess of what we've always gotten when we said "CFS" and people heard "tired all the time".  In 23 years with this disease, only one person has ever said "courageously battling" about me, a term that's always applied to cancer patients, and she's the one with a sister who died of CFS complications, so she knows the truth about the disease, that it's not just a case of the sleepies. 
 
 


Thursday, December 24, 2009

Pain Pills Can Be Deadly

painpatientnews@mail.ivillage.com writes:



Chronic Pain

December 23, 2009

Pain Pills Can Be Deadly
Don't make this medication mistake

 For those with chronic pain, medications to dull the ache are often part of the plan. But you should know some medications can be deadly when taken improperly.

See what drug companies are doing to keep pain meds safe and available to those who need them.

 

Herbs, vitamins that can hurt you - CNN.com

 
Since many of us treat symptoms with non-prescription supplements -- especially when doctors refuse to prescribe anything for those symptoms -- this article is important reading.

5 tips for getting what you need from your doctor - CNN.com

 


 

Lyndonville News

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I hope that everyone is able to have a good holiday season.



XMRV: Quiet Time

My thanks to all those who came to the lecture December 6th on XMRV, and to all those who have kindly donated to the research group. None of the research group is paid from these funds, and if we were to stop working the money will be forwarded to some other group working on ME/CFS, probably WPI. In the spirit of full disclosure, pizzas and other relatively inexpensive luxuries do come from these funds, but no vacations in Maui. I had wanted to write back to persons who have donated but that has proven impossible.

The December 6th lecture was well attended. The reason I did not tape it or put it on the web is for two reasons. First I do not know how and we are kind of busy and I didn't want to take time to learn. And secondly, I expect that every few weeks the material will change and I want to keep this talk up to date. I expect that six months from now the talk will be completely different.

I have had a few requests to give a talk on XMRV, and I am happy to do so, it is one of the joys of being retired. The material I present will be either published, from very credible public sources, or my own personal opinion. I will not share back room gossip, even if it is the stuff that makes my socks roll up and down. My goal is to insist that good science goes into discovering what role, if any, XMRV has in ME/CFS. I will go anywhere in the US if the supporting group covers costs and offers a small honorarium. I think spin off benefits from these talks will be to re-invigorate support groups. Dr. Klimas said in her last talk that now is the time for people to get active and I completely agree.


ME/CFS Essay: Nature Abhors a Vacuum

I have a patient in my practice by the name of Sandra Cousins (an obviously false name). She developed CFS somewhere around the age of nine, and I can remember her confusion going from doctor to doctor, occasional visits to the psychiatrist and acupuncturist. Over the years she has been diagnosed with Lyme disease, depression, atypical MS, arthritis, migraine, irritable bowel and lupus, but no one knew what she had. Like many patients, she could tell that, when the medical provider attended to the chart and did not look her in the eye while delivering a diagnosis, the provider had absolutely no idea of what was causing her illness. Same old story.

Years went by, and after five years of illness she improved enough to deny the existence of any illness. She was getting by. She could not go out drinking with her college friends because it made her very ill and then have to miss a few days of classes. All she could do was classes and organize her study time well enough to pass. But she was "fine."

Work after college was a disaster, as was her love life. But she got by, she was "fine." She stopped going to doctors because they had little to offer except medications that made her feel more ill. She resented being told she was resistant to the obvious truth that she was healthy as a horse.

About ten years ago, Sandra went through a change. She decided that she was depressed and that the doctors were right. She took low doses of antidepressants which did little good but made her doctor happy. She joined support groups, went to therapy, and committed herself to accepting the truth. Or at least accepting what other people considered true. Lots of things didn't fit, but at least now she wasn't crazy, she had a legitimate diagnosis, she was depressed. Being depressed and making up somatic symptoms (somatisizing) was a lot better than being crazy. She was no longer lost in the never-never land of no-diagnosis. She belonged. She went on social security disability because she was unable to maintain eight hours a day five days a week because of the depression.

When Sandra was evaluated for ME/CFS, she was classic. She did not feel despair, in fact, now that she was "depressed" she felt quite good. Except for the pain, sleep problems, exhaustion, abdominal pain, annoying lymph node tenderness and the foggy memory that is.

Nature abhors a vacuum; it is much better to have an incorrect diagnosis than no diagnosis at all. Even when the immunology testing, orthostatic testing, and 2 day exercise testing essentially confirmed the diagnosis of ME/CFS, Sandra was reluctant to believe it. Being "depressed" for the past ten years made her more happy than some unknown diagnosis that doctors didn't believe in.


XMRV Study Notes:

In a recent note by Suzy Chapman on Co-Cure, she quotes Dr Charles Shepherd as writing "...Not surprisingly, the first stage of the attempt to replicate these results has resulted in various international groups almost entering a race to see who could replicate or refute the WPI results first. And this has meant they have gone for an easy and immediate source of patient material - stored blood samples. I am not aware of any stored blood samples here in the UK that are from patients who meet Fukuda plus Canadian criteria and I doubt if there are any.

This brings up really important issues in interpreting the results of studies that will come out over the next six months. In my practice over the years, I have seen the whole range of patients from kind-of tired to bedridden orthostatic intolerance. Despite what the different criteria attempt to prevent, much of the diagnosis is based upon using the "force". There are some clinicians who diagnose CFS and I have absolutely no idea of what their patients are like. Through years of observation, I do have a concept of what Dan Peterson's patients are like.

So is XMRV in really severe ME? CFS? Orthostatic intolerance? CFS plus POTS? Mild fibromalgia? Atypical MS? CFS with or without depression? Chronic Lyme disease? Multiple chemical sensitivities? And what about stored samples? Samples taken in EDTA or heparin? And so on.

So what does this mean? It means that if someone can't find XMRV in a study, it is either because it is not in the patients they tested, or their lab could not detect it even if it was there. Or the strain might be different, or they used the wrong tubes, or the diagnosis was wrong. And on and on. Again using the "force", I would not be surprised if some of the quickest replication studies fail to confirm XMRV. But as long as people do not jump to conclusions too quickly, science will win out. Truth will win out. That's all I am looking for.


Changing Standards to Establish Cause of ME/CFS

Dr. J Silver in a review in Journal Watch said, "XMRV might be a cofactor in another infectious process, or the immunologic problems of CFS patients may increase their susceptibility to XMRV infection. Patients with depression also have impaired immune function; could psychiatric illness predispose to XMRV? The 4% prevalence of XMRV infection in the control group might indicate that XMRV infection is a risk factor for development of CFS."

I am amazed how mainstream medicine is so fixed in their biases against ME/CFS that the concept of XMRV actually causing the illness almost doesn't enter their consciousness. Dr. Reeves, head of the CDC project on CFS has made only one comment to my knowledge, that he "doubted" this would turn out. What a comment. Why not "Interesting…" or "we will see…"

Hillary Johnson made some interesting observations. First,  "Why wasn't everyone demanding dozens of replicative tests on the prostate cancer findings?" Yet when CFS is implicated we will need twenty studies which replicate the first. And if some poor studies do not find XMRV, they will be given preferential weight to studies that actually find it.

Her second point was that "HIV was hailed as the cause of AIDS in the U.S. in the spring of 1984, after the NCI found isolates in fewer than fifty patients. A few weeks later, an NCI scientist isolated the virus from the blood of a nurse in Los Angeles who fell ill with AIDS after a blood transfusion and the virus was found in the donor blood. That's all it took." Dr. Dan Peterson said at the recent CFSAC meeting that a transfusion case of CFS and XMRV has already been found and traced back to the donor.

During the next six months we will know. I am confidant that enough good scientists will try to replicate the WPI study that a bad study here and there will not bury the subject. Meanwhile, what is happening? It is possible that the skepticism is so great that absolutely nothing is happening now. But my hope is that in back rooms across the world scientists are quietly working on this, designing studies to test blood banks, designing treatment studies. Right now is "quiet time"; I hope they are using this quiet time to make some real progress.


Question and Answer

Question: How does XMRV fit in with slow onset ME?

Answer: I have no idea. But in six months to a year we will know. First option is that XMRV has nothing whatsoever to do with ME, it was a fluke, and no one, anywhere, will be able to find it even when they are looking without bias, and in good patients, and with good science. Secondly, XMRV may have either no symptoms, or relatively minor symptoms, and slowly affects NK cells and lymphocytes, permitting reactivation of other viruses over some time.

The Australian government and the CDC may have already done the study revealing the answer, the "Dubbo" study (Hickie I, Davenport T, Wakefield D, et al. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. BMJ 2006;333.)

As you may remember, a small percentage of persons developed ME/CFS after Epstein-Barr virus, Ross River virus or Q fever. They must have saved blood from those who came down with ME/CFS and those who did not. Test the blood for XMRV. If it is in the ones who came down with ME/CFS, but not present in the blood of those people who had regular mononucleosis and quickly recovered, we would have the answer. Ah…if only it were that simple…

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Disclaimer Any medical advice that is presented in the Lyndonville News is generic and for general informational purposes only. ME/CFS/FM is an extremely complex illness and specific advice may not be appropriate for an individual with this illness. Therefore, should you be interested or wish to pursue any of the ideas presented here, please discuss them with your personal physician.

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——————————————————
© 2009 David S. Bell
——————————————————



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David S. Bell/Lyndonville News
www.DavidSBell.com
12851 Roosevelt Highway
Lyndonville, NY 14098
USA
 

Wednesday, December 23, 2009

ME/CFS is NOT a psychiatric condition

 
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From: DEnlander@aol.com




ME/CFS is not a psychiatric
condition.........

Letter to Prime Minister





Derek Enlander M.D.
860 Fifth Avenue
New York NY 10065
212 794 2000
denlander@aol.com



23 Dec 2009




Dear Prime Minister


New medical research, relating to M.E. (myalgic
encephalomyelitis) and the XMRV virus, have
shattered the MRC belief that M.E. is a psychiatric
condition.


The Chief Medical Officer( CMO) and MRC have for
many decades adhered to the idea that these
patients could be lined up as a psychiatric problem.

Certain British psychiatrists used this notion for their
own self interest
in obtaining government research
grants and conflict of interest payment from
disability insurance companies.


The recent M.E. research is not necessarily related
to the resignation of Sir Liam Donaldson from the
post of Chief Medical Officer(CMO) together with the
resignation of the chief executive of the Medical
Research Council, Sir Leszek Borysiewicz.

These resignations however give the present or next
government a chance to clean house.



Both these gentlemen have failed the thousands of
patients who suffer from  myalgic encephalomyelitis
(M.E.), not only failed to recognize their disease but
have gone one step further and labeled them as
psychotic or neurotic.

They have thus been deprived of proper treatment
and relegated to a psychological cognitive training or
worse still a Graded Exercise Therapy (GET), both of
which are defined in medical literature as useless
and in some cases dangerous.


Both these gentlemen failed to react or examine the
motives of psychiatrists promoting these methods.



M.E. is a physical disease and British Medical
establishment must recognize the fact and
underwrite proper research rather that promote
useless psychiatric methods.


Yours Sincerely


Dr Derek Enlander
New York





~~~~~~

Hemispherx comments on Ampligen

 
It should be noted that the term enigmatic means hard to understand or
explain - CFS is actually neither. "We know in part" pretty much describes
all of medicine, but it doesn't automatically make it enigmatic.

Although the research water is muddied by the partially successful
career-long attempts by psychiatric liasons Simon Wessely and Peter Denton
White to use CFS and other similar organic diseases to illustrate the
principles of psychiatrist George Engel's biopsychosocial theory, the
biomedical evidence is no more enigmatic than that of other organic
diseases.

Biomedical researchers have no biomarkers and/or objective tests for
Alzheimer's Disease, Huntington's Disease, diabetes or Parkinson's Disease for example, but no one uses the term enigmatic or enigma to describe them. 
Nor is the etiology of many organic diseases known including that of most of
the diseases listed above, but once again, no one uses the term enigma or
enigmatic to describe any of them.


PHILADELPHIA, Dec. 16, 2009 (GLOBE NEWSWIRE) -- Hemispherx Biopharma, Inc.
(NYSE Amex:HEB) (the "Company"), stated that on December 11, 2009, the
Company, via its manufacturing subcontractor, in Spokane, WA, submitted
comprehensive new data to the regional office of the Food and Drug
Administration ("FDA"), Seattle, WA, which Hemispherx management believes
demonstrate that certain manufacturing issues noted in earlier pre-approval
inspections at the facility have been fully addressed. The referenced
reports on Ampligen(R) (Poly I: Poly C12U), an experimental therapeutic
being developed for potential treatment of Chronic Fatigue Syndrome ("CFS"),
are the combined work-product of the staffs at Hemispherx and its
subcontractor. These are the same manufacturing issues sited in previous
10-Q's and the recent 10-K. These manufacturing issues were also part of a
Complete Response Letter from the FDA described in a December 1, 2009 press
release.

About Hemispherx Biopharma

Chronic Fatigue Syndrome is an enigmatic, profoundly debilitating and
potentially life-threatening disease with which a new retrovirus was
recently associated. Researchers are investigating the possible role of this
virus in the symptomatology of the disease using Ampligen(R) as an
investigational therapeutic.

Hemispherx Biopharma, Inc. is an advanced specialty pharmaceutical company
engaged in the manufacture and clinical development of new drug entities for
treatment of seriously debilitating disorders. Hemispherx's flagship
products include Alferon N Injection(R) (FDA approved for a category of
sexually transmitted diseases) and the experimental therapeutics Ampligen(R)
Oragens(R), and Alferon LDO. Ampligen(R) and Oragens(R) represent
experimental RNA nucleic acids being developed for globally important
debilitating diseases and disorders of the immune system. Hemispherx's
platform technology includes large and small agent components for potential
treatment of various severely debilitating and life threatening diseases.
Hemispherx has in excess of 50 patents comprising its core intellectual
property estate and a fully commercialized product (Alferon N Injection(R)).
The Company wholly owns and exclusively operates a GMP certified
manufacturing facility in the United States for commercial products. For
more information please visit
www.hemispherx.net
 http://www.globenewswire.com/newsroom/ctr?d=180474&l=4&a=www.hemispherx.net&u=http%3A%2F%2Fwww.hemispherx.net .


Information contained in this news release other than historical
information, should be considered forward-looking and is subject to various
risk factors and uncertainties. For instance, the completion of the NDA
filing process with Ampligen(R) and the receipt of a Complete Response
Letter from the FDA do not imply that the Company will be able to
successfully comply with any or all of the requirements requested in that
Letter or that the product will ever be approved for commercial sale. In
addition, the strategies and operations of Hemispherx involve risk of
competition, changing market conditions, change in laws and regulations
affecting these industries and numerous other factors discussed in this
release and in the Company's filings with the Securities and Exchange
Commission. Any specifically referenced investigational drugs and associated
technologies of the Company (including Ampligen(R), Alferon(R) LDO and
Oragens(R)) are experimental in nature and as such are not designated safe
and effective by a regulatory authority for general use and are legally
available only through clinical trials with the referenced disorders. The
forward-looking statements represent the Company's judgment as of the date
of this release. The Company disclaims, however, any intent or obligation to
update these forward-looking statements. Clinical trials for other potential
indications of the approved biologic Alferon N Injection(R) do not imply
that the product will ever be specifically approved commercially for these
other treatment indications; Similarly, the completion of NDA filing process
with Ampligen(R) does not imply that the product will ever be approved
commercially.


Letter to the Editor - "Neurology out-patients with symptoms unexplained..."

Letter to the Editor
SIMON OVERTON
Psychological Medicine, Volume 40, Issue 01, January 2010, pp 172-173
doi:10.1017/S0033291709991413 (About doi), Published Online by Cambridge
University Press 08 Oct 2009

Reply to:
Sharpe, M, Stone, J, Hibberd, C, Warlow, C, Duncan, R, Coleman, R, Roberts,
R, Cull, R, Pelosi, A, Cavanagh, J, Matthews, K, Goldbeck, R, Smyth, R,
Walker, A, Walker, J, MacMahon, A, Murray, G, Carson, A (2009).
Neurology out-patients with symptoms unexplained by disease: illness
beliefs and financial benefits predict 1-year outcome

Can be read for free at:

html version:
http://bit.ly/8q7tVP i.e.
http://journals.cambridge.org/action/displayFulltext?type=6&fid=6778436&jid=PSM&volumeId=40&issueId=01&aid=6778432&fulltextType=LT&fileId=S0033291709991413 

pdf version:
http://bit.ly/6kIxKY  i.e.
http://journals.cambridge.org/action/displayFulltext?type=1&pdftype=1&fid=6778440&jid=PSM&volumeId=40&issueId=01&aid=6778432

If those links I used don't work, follow the link on the home page for the
issue which is a free, open access issue:
http://bit.ly/61jsr1  i.e.
http://journals.cambridge.org/action/displayIssue?jid=PSM&volumeId=40&issueId=01&iid=6778188#  

(The start is a little difficult to read but don't let that put you off.
Well done to Simon. Tom)
 
* * *
 
The last line says it all: "by denigrating a patient's own perceptions of their illness they deny the therapeutic partnership by which any disease may be overcome, irrespective of aetiology."
 
At the hands of doctors who insisted that some anti-depressants and counseling would get me back to work, I simply got sicker.  As soon as I found a doctor willing to prescribe what I really needed, I reversed the years-long decline.  I was accused of not wanting to return to work, when the real issue was that I was not getting what I needed to get back to work. 
 
Had the doctor listened to me at the first appointment, instead of deciding that I was faking, I would've been back to work in a couple months.  Instead, it's been a few months shy of 10 years, and I've been told I'll never recover enough to work full-time again.
 
A therapeutic partnership is crucial to overcoming this disease.  That means doctor and patient working together, not functioning at odds with each other, with one swearing there's a biological reason, a virus, at work and the other nodding his head compassionately while actually believing the only issue is psychiatric.  Finding the XMRV virus has certainly vindicated me, but vindication won't give me the past 10 years of my life back, nor provide a miraculous healing that gets me back to work next week. 

Tuesday, December 22, 2009

IACFS/ME Newsletter

 

IACFS/ME Newsletter

Volume 2, Issue 6 • December 2009

Editor
Rosamund Vallings, MNZM, MB, BS
New Zealand ME/CFS Association
 

             IACFS/ME
    BOARD OF DIRECTORS


    PRESIDENT
    Fred Friedberg, Ph.D.
    Stony Brook University
    Stony Brook, NY

    TREASURER / SECRETARY
    Kenneth Friedman, Ph.D.
    UMDNJ-New Jersey
    Medical School
    Newark, NJ

    Jonathan R Kerr MD,
    PhD, FRCPath
    St George's Univ.
    of London
    Cranmer Terrace, London

    Nancy Klimas, M.D.
    University of Miami
    School of Medicine
    Miami, FL

    Gudrun Lange, Ph.D.
    UMDNJ-New Jersey
    Medical School
    Newark, NJ

    Lee B. Meisel, MD, JD
    Epiphany Biosciences
    San Franciso, CA

    Teruhisa Miike, M.D.Ph.D
    Kohbe, Japan

    Staci R. Stevens, M.A.    
    University of the Pacific
    Stockton, CA

    Rosamund Vallings MB BS
    RD2 Papakura,New Zealand

    Suzanne D. Vernon, Ph.D.
    Charlotte, NC

 


CONTENTS

President's Letter
Welcome Message from Ros Vallings, newsletter editor

XMRV Retrovirus
CFS Advisory Committee Meeting
Survey Request: Send Us the Current Status of CFS/ME in Your Country
Education and Clinical Guidelines
H1N1 and CFS/ME
Medical Student Scholarship for CFS
New Contributors to the Newsletter
Member News

Book Review


IACFS/ME President's Letter

Dear IACFS/ME Members,

Since our August Newsletter, we've had perhaps the most eventful few months in the 25 year history of modern CFS.  In a case-control study published in the October 8th edition of Science, the retrovirus XMRV was linked to CFS/ME.  Principal Investigator Judy Mikovits and her colleagues (sponsored by Whittemore-Peterson Institute [WPI], National Cancer Institute and the Cleveland Clinic Foundation) have produced a level of excitement that only a potential smoking gun could do.  Yet I think caution is the order of the day as replication is required to determine the true significance of this finding.

The hope generated by XMRV combined with the frustration over the Center for Disease Control's (CDC) highly criticized 5 year CFS research plan led to an anything-but-routine meeting of the CFS Advisory Committee in Washington, DC (Oct. 29-30). The meeting was unusually well attended and included a fair number of professionals (including WPI co-founder Annette Whittemore) presenting testimony.   In this issue of the Newsletter, board member Ken Friedman presents more in depth reporting about the meeting which evidenced a rare consensus in the CFS community in opposition to the CDC's $25 million plan.

XMRV and the Safety of the US Blood Supply
The U.S. Department of Health and Human Services (DHHS) has formed an interagency scientific working group on XMRV to determine the prevalence of XMRV in the blood supply.  Given that 3.7% of healthy controls were infected with XMRV in the Science study, the issues of prevalence and possible transmission in the general population are of paramount concern.   This working group will also develop uniform testing procedures for XMRV, a critically important first step prior to large scale studies.  As yet, no timeline has been issued to reach their goals.  Because this group's priority is public health, not CFS mechanisms, they appear to have no particular bias about the role of XMRV in CFS.   Such an independent assessment of XMRV is a welcome development.  

Next Biennial Meeting:  Ottawa, Ontario, Canada;  2011
Ottawa will be hosting our next biennial International Research and Clinical Conference.  This will be our first major conference outside of the US, certainly an overdue development for an international organization.   Ottawa is a beautiful, moderately sized city at the junction of three majestic waterways. As stated on the Ottawa tourism website:  "A cosmopolitan yet surprisingly intimate city; a place where you can immerse yourself in Canadiana and culture".   We should have the exact dates of the meeting shortly.

If you or your organization is interested in sponsoring the conference please contact me (fred.friedberg@stonybrook.edu).

Thank you all for your support.

Happy Holidays!
Fred
Fred Friedberg, PhD
President
IACFS/ME


Message from Ros Vallings, newsletter editor

Welcome to the December edition of the IACFS/ME newsletter. 

XMRV Retrovirus
The past 3 months have been busy and exciting for all those involved in the world of CFS/ME.  On 9th Oct, 2009 an announcement was made in Science that Dr Judy Mikovits and her team at the Whittemore Peterson Institute (www.wpinstitute.org) had found a xenotropic murine retrovirus (XMRV) linked to CFS/ME.  The study reported that over two thirds of patients had the XMRV in their white blood cells compared to only 4% of healthy controls. (www.sciencexpress.org/8October2009/page1
/10.1126/science.1179052
).  This immediately attracted worldwide attention, and as a result, there has been a snowballing of interest in the illness and along with that an upsurge in research.  The studies now need to be replicated in different centres around the world to validate these findings.  It is hoped too that more money will become available to further this research. 

CFS Advisory Committee Meeting
The timing of this potential breakthrough finding was excellent, as the CFS Advisory Committee was meeting in Washington on 29th-30th Oct 2009.  This committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS).  This was a very important meeting and an opportunity for board members to present submissions for future directions.  The complete videocast can be viewed (http://www.hhs.gov/advcomcfs/).  Individual board members' submissions are attached here, with a summary by Dr. Ken Friedman attached here.  We will publish the recommendations as soon as they are available.

Survey Request: Send Us the Current Status of CFS/ME in Your Country
Ken Friedman is also forging ahead to enlarge the ambassadorial membership.  He has invited members and potential ambassadors from around the world to complete and return the survey attached here, which will give us some indication of what is going on in your area.  We can then collate your answers, and get a feeling for how IACFS/ME can be of benefit to members, and promote the sharing of concerns and ideas.  As yet we have not finalized establishment of the Clinicians Internet Group following on from the Reno conference, but meanwhile interested clinicians can still take part in the regular international discussion group established some years ago. (CFS-DOC@LISTSERV.ICORS.org). 

Education and Clinical Guidelines
Education and Clinical Guidelines are very much part of the IACFS/ME role.  This whole area needs review, and we have had useful suggestions from Dr. Alan Gurwitt for improving the CFS/ME education component of our website.  The guidelines committee will convene in the New Year and start working on this. Meanwhile suggestions are welcomed.  It has been suggested that we urgently need to be producing guidelines for management of H1N1 (Swine) flu in relation to CFS.  There is a good management overview written by Dr. Charles Shepherd on the British ME Association website. http://www.meassociation.org.uk/index.php?option=
com_content&view=article&id=1054&Itemid=215


H1N1 and CFS/ME
Thinking about H1N1 influenza is important at this time of year as the northern hemisphere winter approaches.  In New Zealand we had a number of cases during our recent winter flu season, and I have seen 2 cases of CFS following on from this infection, both teenagers.  I wrote up one case study, which is now on line ahead of print and to be published shortly in the Journal of Clinical Pathology (http://jcp.bmj.com/cgi/content/abstract/jcp.2009.071944v1).  Identification of the risk and correct management strategies are obviously important to prevent more CFS cases.  Vaccination against H1N1swine flu will soon be offered and we do need to be producing guidelines for its suitability for CFS patients.  If anyone is interested in becoming involved, please let us know.

Medical Student Scholarship for CFS
The New Jersey Statewide Chronic Fatigue Syndrome Medical Student Scholarship Program was judged recently and the essays submitted were of a high quality.  The winning essay by Madeleine Sterling is attached and can be downloaded here, together with an overview by Ken Friedman about the NJ CFS Association and the scholarship programme.  This provides a wonderful opportunity for promoting interest and education at the student level.  It is an idea that could be encouraged at other universities. 

New Contributors to the Newsletter
During the past few months we have been delighted to receive some contributions to this newsletter from members. Three useful articles are attached: Frank Twisk (Belgium) has sent us a review on CBT and GET in ME/CFS published in Neuroendocrinology Letters, Vol 30 No 3, 2009 (download PDF file here);  Annedore Hoeck (Germany) has sent a version of her article on Vitamin D deficiency in relation to CFS (download PDF file here) and Laurence Felker (Reno) has sent in an article looking at Potential Causal Retroviral Paths in Neuro-immune Stress Disorders (download PDF file here).  These articles all provide a useful basis for further discussion.

In addition to these articles sent in by our members, I have found other articles on related topics which may be of interest and use clinically:  (full references are attached here)

The doctor-patient relationship in chronic fatigue syndrome: survey of patient perspectives
Neuraminidase inhibitors for treatment and prophylaxis of influenza in children.
Undesirable drug interaction in palliative medicine 
Increased D-Lactic Acid Intestinal Bacteria in Patients with CFS
A review of Complementary and Alternative Approaches to Immunomodulation
Assessment and Management of Medically Unexplained Symptoms

These articles should be read critically, and comments for future newsletter discussion will be welcomed.

Member News
Dr. Ellen Goudsmit has been elected a Fellow of the British Psychological Society.  A letter from her is attached here.

Board member Staci Stevens reported that her university department CFS Journal club had been visited by seven senior faculty members and students.  It is hoped that CFS will be viewed in a more positive light in an academic setting. (http://web.pacific.edu/x508.xml)

Dr. Peter Snow the New Zealand GP who first described Tapanui Flu and presented at several IACFS conferences, died in 2006.  He has recently been honoured with a community memorial in Tapanui
(http://www.odt.co.nz/the-regions/southland/38878/
long-serving-district-doctor-be-honoured
).

I have reviewed below the excellent book written by our president Fred Friedberg.  If any of you find books that can be of interest to our members, please send in your reviews for publication in future newsletters.

Please write to us also with your ideas, comments, views, research in your country etc. (Vallings@xtra.co.nz).  We also welcome abstracts for consideration for the Bulletin (greg@iacfsme.org).  If you are interested in representing your country for IACFS/ME please contact Ken Friedman (friedman@umdnj.edu).  If you have information about forthcoming conferences or meetings in your area, please let us know.

Sincerely,
Ros
Rosamund Vallings, MB, BS


Date for your diary:
5th Invest in ME International ME/CFS Conference – 24/5/2010 - London
http://www.investinme.org:80/IIME%20Conference%202010/
IiME%202010%20International%20ME%20Conference%20Home.htm


Book Review  

Fibromyalgia and Chronic Fatigue Syndrome
By Fred Friedberg, PhD

New Harbinger Publications, Oakland, CA. 2006

This excellent book focuses on seven proven steps to less pain and more energy.  There is a good initial overview about the illness and a look at possible causes and lifestyle factors, with a review of some of the psychological styles that can help or hinder management of this illness.

The seven step approach is logical, and based on a combination of good common sense and sound psychological principles.  The steps cover relaxation, sleep, activity, dealing with anger, relieving worry and guilt, experiencing pleasurable feelings and getting support from others.  Making changes when change seems impossible is a helpful and positive strategy.  Finally there are some chapters on how and why medical interventions may not help.  The book emphasises an approach based on healing rather than absolute cure. Included are some case studies as examples using the principles outlined.

This is a very readable and useful manual which I would recommend for health professionals and patients alike.  It would be appropriate also for help in dealing with other chronic illnesses. 

—Ros Vallings, MD

 


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