I subscribe to Yahoo! Alerts and my Inbox this morning was flooded with new articles on treating ME/CFS. Every single one of them refers to the recent British PACE trials which focus on treating ME/CFS with ONLY Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET). Not a single word about underlying infections, immune system dysfunction, orthostatic intolerance, or post-exertional malaise.
Sorry I don't have time today for a more in-depth discussion of this sad news, but Jamie is still home sick, I'm still worn out and overwhelmed, and I need to spend yet another Friday packing up for a weekend trip (this time to my mom's house). I hope to get back to a more "normal" routine next week. Meanwhile, here's a quick paste of some of the article summaries - prepare yourself - it's depressing! Some of these headlines alone will be quite damaging:
Pushing limits can help chronic fatigue patients
ABS-CBNNEWS.com Thu, 17 Feb 2011 17:26 PM PST
LONDON - 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.
Study questions chronic fatigue treatment methods
The Washington Times Thu, 17 Feb 2011 17:21 PM PST
LONDON (AP) - The biggest ever study of chronic fatigue syndrome treatments has challenged the strategy championed by patient groups _ taking it easy is not the best treatment, exercise and behavior therapy are. For years, patient groups warned such treatments could be dangerous, instead promoting a strategy known as adaptive ...
Got ME? Just get out and exercise, say scientists
Independent Thu, 17 Feb 2011 17:12 PM PST
The UK's largest study of treatments for chronic fatigue syndrome has provided the first definitive evidence of what helps those who suffer from the disabling condition that affects 250,000 people in the UK.
Exercise best cure for fatigue
Stuff Thu, 17 Feb 2011 17:09 PM PST
The biggest ever study of chronic fatigue syndrome treatments has challenged the strategy championed by patient groups - taking it easy is not the best treatment, exercise and behavior therapy are.
Behaviour and exercise therapy best for treating chronic fatigue syndrome: study
Brandon Sun Thu, 17 Feb 2011 17:05 PM PST
LONDON - The biggest ever study of chronic fatigue syndrome treatments has challenged the strategy championed by patient groups — taking it easy is not the best treatment, exercise and behaviour therapy are.
CBT and GET can safely be added to SMC to moderately improve outcomes for chronic fatigue syndrome, but APT is not an ...
Lancet Thu, 17 Feb 2011 16:16 PM PST
Trial findings show cognitive behaviour therapy (CBT) and graded exercise therapy (GET) can be effective treatments for chronic fatigue syndrome, but patients' organisations have reported that these treatments can be harmful and favour pacing and specialist health care.
Therapy, Exercise Help Chronic Fatigue Syndrome
WebMD Thu, 17 Feb 2011 16:11 PM PST
Cognitive behavioral therapy and exercise, in conjunction with medical care, are safe and effective ways to treat some of the symptoms of chronic fatigue syndrome (CFS), finds a new study published online in the Lancet.
Study supports use of 2 controversial treatments for chronic fatigue
CNN Thu, 17 Feb 2011 16:09 PM PST
British researchers reported Friday that two controversial treatments for chronic fatigue syndrome appear to be more effective than a third, more commonly accepted treatment, and none of them appears to be linked to major safety problems.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
I try to avoid reading anything that comes out of England....this one's hard to avoid, though, isn't it. It's such a disappointing and frustrating thing to see plastered around the media - that exercise and phsychology are the answers...if that were true many of us would be better wouldn't we? The other frustrating thing is to think of all the resources (money etc.) that went into doing this study. What a waste. No wonder we're stigmatized.
ReplyDeleteThis is truly awful. My husband says that the study has to be discredited (since we KNOW it's flawed). What criteria did they use to decide people had ME/CFS? etc.
ReplyDeleteI hope that some researchers and doctors in the U.S. who have devoted their lives to this illness will get on board and challenge this.
I just posted this comment at the NY Times article. I hope others do the same:
ReplyDeleteI wish that before this story went to press, some of the leading CFS experts in this country had been asked for their reaction to it. One example. Dr. Nancy Klimas of the Univ. of Miami was interviewed about CFS in the NY Times about a year ago. She said that she treats both HIV/AIDS and Chronic Fatigue Syndrome patients and that the CFS patients are much more sick and disabled than the HIV/AIDS ones. I wish I had the full text of her comments. It was a revelation for many people. Please do a second article in which you talk to her or to Dr. Anthony Komaroff of Harvard Medical School. They have devoted their lives to treating people with CFS and they can shed light on whether a study (partially funded by insurance companies and excluding people who are house-bound by CFS) that says CBT and exercise are the best treatments might just be flawed.
This truly is a bad day in the history of me/cfs especially here in the UK. How many patients will be harmed by exercise therapy prescribed in good faith by their general practitioner? How many people will now suffer discrimination from unbelieving friends/relatives etc. I can't believe we are in this situation after all this time. I'm starting to wonder if this illness will ever be free from controversy. The UK will probably be the last place on earth that clings to this psychological mumbo-jumbo. I just don't understand!
ReplyDeleteSorry for the depressing rant.
Neal
This just sucks. I didn't realize that the media blitz was so vast. I suspect that at the root of this is money. If the official stance on CFS is GET and CBT, then the patients get dumped into the mental health bucket which in England is a differnt system and pool of money than the regular National Health pool. In the US the problem is that DSM5 is about to get published and CFS is in there as a diagnosable psych problem with GET and CBT as a cure. In both instances the health insurance systems won't have to pay for costly antivirals if this turns in a psych issue. Considering the number of people sick this equates to LOTS of money.
ReplyDeleteThe study in England is flawed at its root for two reasons: the definition they used for CFS and the exclusion of any patients with neuro symptoms. In other words the cohort was probably made up of depressed patients and not CFS patients so of course the GET and CBT showed positive results.
Many people have spoken out against this flawed study so I just don't understand the flood of media articles. It has to be a marketing campaign by someone in power trying to cut health care costs in England. Don't forget their gov is on the verge of collapse and they are making severe budget cuts over there. The last thing they need is a bunch of very sick patients all going on antivirals at the same time.
Ugh. That is horrifying. Just another step backwards. I feel sorry for people with CFS who are newly diagnosed and just starting to navigate this minefield. I fear for all the harm this will cause.
ReplyDeleteIt is so frustrating and discouraging. Here's a good in-depth analysis of the paper by Professor Hooper:
ReplyDeletehttp://www.meactionuk.org.uk/Hooper-response-to-PACE-Trial-Press-Release.htm
Apparently they selected for patients who didn't have neurological symptoms... basically excluding ones who ffit ME criteria. That is this everywhere in the news is truly terrible. ANd the number of articles where the comment section was closed off makes refute by the patient community even more difficult. think we all feel set back by this.
ReplyDeleteThere is so much science behind why pushing limits is bad for us, yet this si what people will read. Why didn't the study by the Pacific Fatigue Labs which proved an impaired cardopulmonary function following activity, get put on every news page?
Sad day for us all. Please take care over the weekend everyone. We will get through this.
D.
Oh the emotions I am having right now.
ReplyDeleteI feel like MY experiences with CFIDS are being totally disregarded by all of your reactions to these articles.
I have been blogging for years that my efforts of pushing myself very gradually, no matter how hard, have helped my CFIDS! Just like these articles are saying! Counseling has also helped me tremendously off and on to change my thinking which also has helped improve my CFIDS!
I think I will reserve the rest of my comments for a future post of my own at my blog.
I love you all, I truly do, and I feel a real sense of community with you all.
I know my ways are controversial and that I need to be patient and understanding with the majority of the thinking.
And I GET that many or most CFIDS patients can not do what I am doing! But that does not mean that I or others can't!
Gradually increasing exercise, weight training, and yoga DO HELP ME GREATLY.
Please stop forgetting about me in your blogs when you talk against these kinds of studies!!
Thank you!
Judy
This is exactly why I do advocacy. Though my little posts can hardly compete with an onslaught of press releases. Gah.
ReplyDelete