NYT:" Psychotherapy Eases Chronic Fatigue, Study Finds"

[Hope123]

Folks, time to gather the troops to write in...............................

UK PACE study out today with results:

http://www.nytimes.com/2011/02/18/health/research/18fatigue.html


Tuller does attempt some degree of balance and points out patient views as well as that study authors have insurance ties but read and comment as you feel.

Look at high-lighted blue "Readers Comments" box and click on it.

[Feel free to move post as appropriate.]

 

[bluebird]

I just read this at 7:00 pm http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?_r=1&ref=global-home ( How can this be called breaking news? This is a giant leap backwards. I can't believe this is happening...totally freaked. )

 

[bluebird]

And I cannot comment as I feel. That would involve profanity.

 

[Dainty]

Here is the Reuters article of the story.

Helping chronic fatigue syndrome patients to push their limits and try to overcome the condition produces a better rate of recovery than getting them to accept the illness and adapt to a limited life, new research has found.

...

Some patient groups...have expressed concern that treatments like cognitive behavior therapy (CBT) that encourage patients to try to overcome or push the limits of their condition may even be harmful.

But in this study, which involved 640 patients in Britain, researchers found that CBT and another therapy called gradual exercise therapy (GET) were far more successful than adaptive pacing therapy (APT), in which the patient tries only to match activity levels to the amount of energy they have.

There are just no words.

 

[alex3619]

This is my reply to the NYT article:Your Submitted Comment
Display Name
alex3619
Location
Logan, Australia
Comment
Has anyone commenting on this read the official complaint on the PACE trials by Prof. Malcom Hooper: Magical Medicine? More recently the physiological basis of the negative response to exercise in ME/CFS has been partly worked out, with profound changes to cellular RNA synthesis. The kinds of studies in the article that promote CBT and GET use the Oxford criteria, which has never been scientifically validated and is not the internationally recognized standard. It is snake oil. They also ignore maybe 99% of the published peer reviewed science on the subject, in the study design, implementation and analysis.
Why are so many people swayed by these snake oil salesmen?

 

[Nielk]

I just read this at 7:00 pm http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?_r=1&ref=global-home ( How can this be called breaking news? This is a giant leap backwards. I can't believe this is happening...totally freaked. )

Even worse than the article in the NYTimes is the comments by readers.

I would like to know who are these CFS patients who volunteer for these studies????
If no one would volunteer for these idiotic downgrading biased studies than they would not exist.

 

[meadowlark]

The comments break my heart. I'm in so much shock I can't get a reply together, and I'm poor at expressing the science, though I understand a lot of it. I assume many PWC who are more on the ball than I am can fill in essential information that David Tuller left out and counteract the idiocy of the comments (8:51 p.m., EST).

 

[alex3619]

Hi, this is my reply to Reuters:

Nobody can say anything intelligent on this topic without reference to the 442 page official complaint to the PACE trials by Prof. Malcolm Hooper, called "Magical Medicine". This study uses an unvalidated diagnostic criteria for ME/CFS that is not the internationally recognized standard. It ignores maybe 99% of the published peer reviewed scientific evidence. It ignores this evidence in study design, implementation and probably also analysis (I have yet to read the study, but I am familiar with it). This is snake oil, dressed up as fish oil. The physiological problems from exercise in ME/CFS have been partly worked out, and there are profound changes to the mRNA of the cells post exercise. Physiology is nearly always ignored in the CBT/GET promoting studies. Why is that?

 

[sleepy237]

This is their first attack back. Who knows what's next. It is a ppoor attack. I just hope that "the money doesnt talk" . Depression causes fatigue, very plausible but it doesnt cause the syndrome. It doesnt cause OI, POTS, MCS, and using GET on people who have heart disturbances is a crime against humanity. If ONLY this was ONLY fatigue. I'd settle for it in a minute. They know its not. We are too good for them. Let the truth commence. Wouldnt mind all the testimonials being posted of recovery ...so angry. Absurd!

 

[bluebird]

Ty, alex, for saying what I wanted to but could not; I am too sick...maybe I should get up and push through my limits...
Ty dainty, for posting the Reuters version; not sure which is the worst of the two stories.

I've been very very very sick lately, and I am growing more so. I am losing hope for myself as I have no access to knowledgeable doctors and I am now 60. And I am tired of suffering. My life from kindergarten has been lived around this illness: I pushed through until I could no more. So to me, this an absurd 'news' development and is more than discouraging. I have spent the last 18 years in bed. I work to find compassion for the sincerely ignorant and even the willfully ignorant. But right now... I have none. This so-called news/ie propaganda is incredibly depressing.

 

[alex3619]

Hi bluebird, thank you for the kind comment. Do not push yourself if you are that sick. If you ever feel you should push, wait for something really important such as a world petition, then sign it. Stay within your limits, but if you do have a tiny amount of energy to spare, do something very small. If we all do what we can, according to our limits, the combined result is not small.

Bye
Alex

 

[Dainty]

Yes, thank you alex, greatly appreciated.

For me, reading the articles actually made me feel more confident. This study is their comeback. This is their counter-attack. We've scared them into bringing out the "big guns", and in the end we'll have the last laugh. We've got the truth on our side, and the evidence is piling up, it's only a matter of time. They might have the moneybags and the political clout to choreograph studies to say whatever they want them to but we have numbers on our side and our hearts are in this fight to win it--the bullys don't stand a chance. It'll happen. They're just making it worse for themselves.

 

[taniaaust1]

i posted the same article in the research section as i wasnt sure what area it went into and it said new research...

The war is on... the insurance companies dont want our illness to be "real" and cost them a lot.

These articles scare me as it is what the general public are then listening to and CFS/ME will suffer due to that. The fact that the insurance companies are involved and the different definations used in CFS, so this is all biased stuff ..would be going over their heads.

This is why more then ever, we NEED to get the definations of CFS/ME changed to quite serious definations (which dont include just depressed)

 

[Mark]

At least in the US you get to comment on the article, and the article itself includes some element of recognition that there's another side to the story. Not so in the UK - the BBC just regurgitate their psychospin with no quarter given to any dissenting voices.

But OMG the bastards were well-organised and knew when this publication was coming, and they got all their sick prejudices expressed right from the starting gun on the comments; people normally only read the first few...and I can't bear to read past them myself now - the first three or four make me feel sick in themselves...

 

[beesknees]

Does it say how long they tested this on people? Was it a day, week, month, etc. Just curious.

 

[Hope123]

But OMG the bastards were well-organised and knew when this publication was coming, and they got all their sick prejudices expressed right from the starting gun on the comments; people normally only read the first few...and I can't bear to read past them myself now - the first three or four make me feel sick in themselves...

If you sign up and "recommend" a comment, it will go under "most recommened" and might be read more.

If you write an insightful comment, it might be highlighted by the editors.

So not just the first comments are read.

 

[alex3619]

'Hi beesknees, the PACE trials have been going on for years. Originally they couldn't find enough participants, they they relaxed their already relaxed criteria. That tells you a lot. Bye, Alex

 

[Snow Leopard]

'Hi beesknees, the PACE trials have been going on for years. Originally they couldn't find enough participants, they they relaxed their already relaxed criteria. That tells you a lot. Bye, Alex

Well over 70% of the 3000+ patients were rejected after pre-screeing, for not meeting Oxford criteria!

The war is on... the insurance companies dont want our illness to be "real" and cost them a lot.

For insurance companies that is true. But the cost is just shifted towards the government. And the costs due to loss of productivity affect us all, and this cost is substantial. The government has a strong incentive to research the pathology of CFS.

Seriously, whenever CFS is mentioned in the media, we need to comment (a) there is no curative treatment demonstrated in the medical literature and (b) mention the economic costs which are in the billions of dollars and how if you compare research spending vs economic costs of any other disease, the fair amount of NIH (USA) would be in the $100-250million PA range.

http://www.ncbi.nlm.nih.gov/pubmed/18397528
http://www.ncbi.nlm.nih.gov/pubmed/21251294

 

[meadowlark]

Hi Mark: Right now there are 52 comments, with only a few intelligent ones, and many mocking sufferers using the "gee, I get tired too" meme. The New York Times moderates the comments to make sure they aren't libelous or completely crazy, so I assume there is a bank of intelligent comments waiting to be released when someone goes on the job at 9 a.m. The good thing is that you can read comments from "old" to "new," or "newest first," and "newest first" is the automatic setting. So as comments from informed PWCs flow in, they will be read by most people, not the knee-jerk, patronizing type.

I find this so stressful that I'm staggered when I think of how much more ignorance, and real medical malfeasance, people in the UK endure.

Must stop typing now ... it's one of those days when I can't hold my wrists up to type too long.

 

[carol]

This trial was set up by psychiatrists to ensure CBT and GET were proved to be the correct treatments. They screened out anyone with neurological symptoms, all under 18's and anyone deemed to have cfs seriously. Part way through the study the criteria were relaxed even more as not enough patients were being referred, the Dr's were asked to send anyone with fatigue like symptoms. Post exertional malaise was not a necessary symptom. Also early on in the trial outcomes measurements were done with patient questionaires and not scientifically with pedometres or actimetres. Everything was done to ensure the outcome was what the psychiatrists wanted. Two researchers had connections with medical insurance companies. Patients were apparently threatened with a withdrawal of benefits if they did not participate ( refusing treatment) and they had to sign disclaimers so those that were made worse by GET had no comeback. The whole thing appeared to be set up to prove ME was a psychological illness. It is a bad day for all sufferers let alone those of us in the UK who are now looking at no other treatment than CBT and GET, plus less chance of benefits, ill health retirement pensions etc. NICE guidelines will reflect this result and patients will be refused all other care; a bad day.