NYT:" Psychotherapy Eases Chronic Fatigue, Study Finds"

[meadowlark]

In case it's of interest, the comments were still 99% appalling at 10:47 a.m. I got an sudden surge of energy, so I wrote this response. It may have some errors, which is not good, but it's the best I can do today, and at least it presents the case for science in more detail than others:

"The ignorance displayed in most of the first 60 posts is appalling. Some posters intend to be cruel. Others don't mean to be, but that is the effect.

Chronic Fatigue Syndrome, more correctly called Myalgic Encephalomyeletis or ME/CFS, is not "chronic fatigue," as in "always tired." As comment #20 brilliantly observes, you might as well call Alzheimers "Chronic Forgetfulness Syndrome."

In fact, the World Health Organization defines Chronic Fatigue as a neurological illness for a reason. And the Canadian Consensus Criteria, considered by most researchers around the world as the gold standard for diagnosing ME/CFS, puts ME/CFS in the "NeuroEndocrineImmune" category, meaning it attacks all three systems. Among the symptoms: orthostatic intolerance (meaning you can't stand up for long, because your blood pressure plunges and your heartbeat soars), post-extertional malaise (at its most severe, after walking half a block you are too tired to hold a pencil--and for some, even holding the pencil makes them too tired to turn their head on a pillow), swollen glands, constant fever, vertigo and visual disturbances, fibromyalgia, chemical sensitivities causing nausea, migraine and severe headaches, muscle pain and weakness, spatial instability and disorientation, and adrenal dysfunction. And of course, a damaged immune system means you are vulnerable to almost any bug out there, as well as malignant conditions like cancer. On average, ME/CFS patients die twenty years earlier than healthy people.

The British researchers have reached their bizarre conclusions because, in order to support the UK's long-entrenched belief that ME/CFS is psychomatic, they actually disallowed any of the above symptoms from the patients in their study. Applying their results to the reality of millions of ME/CFS sufferers around the world is absurd, and Tuller's article should have noted that oranges are being compared to apples.
.
In 2009, ME/CFS specialist Nancy Klimas, whose practice was once busy with HIV, told the New York Times i that "My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."

Indeed, since 2009, two ironclad studies involving (collectively) the Cleveland Clinic, National Cancer Institute, National Institute of Health, Food and Drug Administration and the trailblazing Whittemore-Peterson Institute have found a retrovirus (XMRV) and its family present in the blood in the overwhelming majority of ME/CFS patients. Retroviruses write themselves into your DNA and are incurable. There are only three known human retroviruses (HIV is the best known).

To those who dismiss the illness as a psychological condition of malingerers ... I suggest you present your case to the institutes I list above. Your rigorous scientific method (i.e. "some self-diagnosed person I know") will be of particular interest."

I'm now terrified that Tuller did note this, and need to check. If so, I'll do a follow-up correcting myself.

 

[meadowlark]

Here's my follow-up:

"To correct my previous comment, Mr. Tuller does note that there are various definitions of ME/CFS. But I believe he errs on the side of "I'm just telling you what people say, and you decide." Criticism of the UK's long-entrenched belief in the psychological root of CFS has not been done by cranks. It is rigorous, and of grave concern.

Many people believe the earth is flat, but a reporter who doesn't comment on where such beliefs originate isn't doing his job. I write this as someone who is grateful for Tuller's previous reporting on ME/CFS. Perhaps in the cause of balance, he is being exceptionally gentle in his reporting in this piece. But to quote James Thurber (sorry to sound pretentious, but I've never forgotten this) "You may as well fall flat on your face as to lean too far backwards."

 

[max]

.... this is why the recent xmrv study was stopped in Spain - this is why there are the 'contamination' issues amongst research not utilising the same protocols as the WPI.

People - this is not an evolving situation - it is guided and manipulated.

I am not aware of anyone being helped by CBT/GET - how many other illnesses are surrounded by such a messy murky disgusting treatment protocol?

Treatment of this condition has not changed in 20years - the same psychiatrists prostituting their beliefs on vulnerable patients. Never accept CBT/GET as a primary treatment - just say "NO".

The benefits situation in the UK is going to be difficult, even more so now. I recently read about the Cameron regime getting involved with some French 'shrinks' with the aim of labelling all benefit recipients (regardless of which benefit they receive) as in need of bio-psychosocial help. Sound familiar? Patients with ME/cfs will simply be included. Wessely's work is almost complete - I'm sure he will be recognised for his help by the UK establishment.

What makes all these abhorrent excuses for human beings suddenly get interested enough to post on sites such as the crappy Daily Mail when they run a story as they have today? I find it unbelievable that people not personally affected by ME/cfs suddenly write a comment? Do they do this for all illnesses?

What goes on in the mind of those psychiatrists who are involved in these CBT/GET 'research' trials - how do they sleep at night - come the revolution they will be first against the wall.

We are running out of time - ask the men and women who fell ill with Gulf War Syndrome - Wessely's filthy paws were all over that too.

No treatment at all is preferable to accepting CBT/GET - I am not sure about this but I believe any treatment offered by the NHS can be refused. What would they do if everyone refused their treatment on the grounds that it is harmful to a significant proportion of patients?
We ALL need to refuse to see psychiatrists - they are not scientists - they are sociapathic tarts.

I am disgusted to be a resident of the UK - I can only apologise for the lead taken by the UK psychiatrists.

:Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad:

Please excuse my 'blast' - I am fuming.

 

[max]

..... and another thing -----

If these psycho's are right about this illness and it is nothing that a change of belief cannot sort out then why is it that throughout Wessely pimping his treatments for the last 20 years the numbers of those affected with this condition have risen from 1million to todays 17million. I would conclude that his poxy ideas are a load of tosh.

 

[urbantravels]

There are getting to be better and better comments on the NYT article.

I would like to make a request: Can someone from the UK, or at least someone who is very familiar with CBT as practiced in the UK, leave a comment describing what CBT *as practiced for ME* in the UK actually consists of?

I see comment after comment along the lines of "Well, of course a little therapy is good for anyone with a disease and will help them feel better." I also see better informed posters decrying CBT in their comments, without explaining to the uninitiated reader that the form of CBT practiced in this study and in UK practice is **not** the same thing as therapy that helps you cope with your illness. Nobody has the faintest understanding that this CBT is about curing your "mistaken illness beliefs." ..rather than being the kind of compassionate, supportive therapy that might help anyone with a serious illness cope.

I'd love to see a really good post on the NYT website explaining
- what this CBT actually consists of
- how it might influence one's answers on a questionnaire about your functioning
- what are the consequences for patients in the UK who do not "cooperate" with this form of therapy


This is the New York Times: it's important.

There is also a link for "Suggest a correction to this article" if someone has a really polished critique they'd like to send directly to the editors. I believe that the editors do read all the comments too, of course.

 

[Hope123]

THANK YOU to everyone who wrote in or "recommended" a comment. It was good to see the number of people who wrote in after I posted yesterday afternoon.

Online comments are no longer being accepted but you can still:

1) Log in (you need to register first) and recommend comments you agree with so they end up on top

2) Write a letter to the editor:

http://www.nytimes.com/content/help/site/editorial/letters/letters.html

The more people write in, the better chance we might have of getting something published that reflects how patients and their families are affected by this research. Go team!

 

[meadowlark]

At least one person sent in a second comment, apologizing for not understanding ME/CFS in her first one. Changing minds, one at a time!

 

[Emmanuelle]

Sooner Sharpe, Wessely et al get infected with XMRV the better.
Hell, sooner a bunch of fat cat scumbags, like our politicians get it, and THEN they'd move their stupid arses, the better.




We are being deliberately targetted for extermination by denial of medical aid and ability to sustain ourselves (welfare/insurance) in this mad world we Humans have created.
SAME sh*t as they did to the AIDS victims because they were "un-Godly faggots" or whatever bigotted lunacy infested their minds, ugh.
We are inconvenient, "weak, surplus to requirements" or whatever
time we BIT BACK.

I'm sharpening my teeth, Silverblade ...

 

[alex3619]

on a brighter note

I really hope this was the psychobabble attack back, I really do. It took years and major funding to happen. As the biomedical findings keep rolling out, where are they going to get new ammunition from? The will increasingly sound like complete idiots to scientists, who will influence doctors, and from there it might flow through to the media - if we keep pushing. We cannot stop fighting this.

 

[Tia]

Uuuhm, you know me: I don't dosagree on much but this.. Oh wow, I've been in the psychiatry for 13 years now and have had DBT, CBT, Psychodynamic therapy and have talked to at least 20 different counsellours and psycologists if not more.. NOTHING has helped me. So NO. This is pfysical and nothing else. My psychiatrist thinks so to, and he is one of the most respected psychiatrists in this town. (Which isn't that small.)

 

[Nielk]

This is a letter that I e-mailed to The New York Times


I am responding to the New York Times article of February 17th titled:
Psychotherapy Eases Chronic Fatigue Syndrome Study: By David Tuller

I am not sure why the NYT stopped incoming comments about this article.

This "so called study" on "so called Chronic Fatigue syndrome patients" is totally unfounded
medically.

First of all, it was funded by Insurance Companies who have a great stake to keep
CFS in the mental health category so that they do not have to pay out our medical costs
nor are they responsible then to pay disability benefits to the claimants.

I am surprised that a newspaper like the New York Times would give credence to such a study.

They don't even explain who these patients were. Who diagnosed them? Were they self diagnosed?
Was this a double blind study?

I have suffered from CFS for the past 8 years. I am totally disabled by it. I have chronic headaches, flu like symptoms,
pains in my joints, cognitive and memory problems.

I cannot stand for more than a few minutes without collapsing.
I have been bed bound for weeks at a time.

The medical establishment tried to give me anti-depressants but, they didn't work.
They aggravated my symptoms because It's not depression that I am suffering from.
I suffer fro PEM - Post Exertional Malaise which means if I do any type of activity, I will have a worsening of my symptoms for a few days.

There is so much misunderstanding about this illness and publishing such an article just adds fuel to the fire.

 

[Martlet]

Just catching up after a busy spell (house on market, trying to get documentation together to emigrate) and clicked on this thread, then the study. I am stunned!

During the first three months after diagnosis, in 1992, I devised these really, really complicated graphs so I could see at a glance what level of activity caused what degree of a crash. Well that was a monumental failure, so I tried what these people are now suggesting. All by myself. The result? A wheelchair. I received some cognitive behaviour talking (my psych, whom I had to see to try and find the right sleep meds - a rule of the US air base at which I was diagnosed) wasn't trying to cure me. He was trying to help me adjust to this new and frustrating reduction in activity. I ignored him, convinced that I could gradually increase my level of activity. The result? Another step down deeper into illness. When we moved to the States, I tried again, slowly. I ended up so ill I could barely move, in my wheelchair most of the time, thin as a rake and having convulsions. If anyone wants to tell me that anything but heeding our own bodies works, they will hear words they didn't know a woman was familiar with!!!