You may be wondering why I haven't said anything before now about the "big study" on graded exercise therapy and chronic fatigue syndrome. It's captured a lot of headlines and created quite a stir. The reason I haven't mentioned it is simple: in my opinion, it's not much of a study.
First, the 600+ participants were chosen based on the Oxford criteria, which is typical of research in the U.K. For those of you who don't know what that means, here's the briefest possible explanation:
- Most ME/CFS researchers around the world use the Fukuda definition, named for the lead research of the paper establishing the criteria.
- The U.K. uses what's called the Oxford criteria, which falls under the World Health Organization category of "Mental and Behavioral Disorders."
- Many ME/CFS patients, advocates and researchers consider the Oxford definition inadequate for separating true ME/CFS cases from primary mental and behavioral disorders, which skews research.
My personal opinion on this is: you can't have two definitions of the same illness. Two definitions means two illnesses. I feel that the Oxford criteria participants are different enough from Fukuda-defined participants to make Oxford research of little use.
Second, the results of this study -- lauded as the largest of its kind -- are really not impressive. One headline proclaimed Exercise Reverses Chronic Fatigue Syndrome, and really, the study said nothing of the sort.
The researchers looked at whether participants did better with standard care plus either graded exercise therapy (GET), cognitive behavioral therapy (CBT) or adapting pacing therapy (APT). Critics of GET and CBT have said that while they work for some, they're ineffective for many and even harmful in some cases, and the researchers were challenging that belief. They concluded that GET and CBT are safe and may "moderately improve outcomes" for some people while APT didn't appear to make much difference.
So when you combine moderate improvement for some with criteria that allow too broad a spectrum of people, we're left with ... not much. It's certainly not enough to justify making GET and CBT front-line treatments, which they are in some places.
I'm not the only one who feels like this study isn't worth a lot. I found an editorial from an interesting perspective on CNN.com, written by Dr. Charles Raison:
What do you think of this study? Do you have personal experience with GET, CBT or APT? Leave your comments below!
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- Exercising With Chronic Fatigue Syndrome
- Pacing Yourself With Chronic Fatigue Syndrome
- A Simple Explanation of Chronic Fatigue Syndrome
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I’ve had CFS for over 6 years, and the only thing that really matters to the course of my illness is pacing. It is absolutely critical. When I carefully pace myself, my “energy envelope”–meaning my ability to function–gradually expands, so that I go, over the course of a year, from being bedbound to being housebound but able to sit up and move around a bit, and then, if I’m really careful, in another year, to being able to get out of the house fairly often, and in another year, to being able to work very part-time. Who knows what would happen if I could avoid a serious crash for more than 3 years? I don’t, because I’ve never managed to pace myself well enough for that long. Eventually, I make an error in judgment, overdo in some dramatic way (like spending 8 straight hours upright), and it’s back to bedbound again, and I start the cycle over. So, although I suppose I might derive some benefit from CBT, GET seems like a really bad idea, unless it was extremely carefully monitored and calibrated. I have often wished I had a physical therapist who really understood CFS who could help me with an “exercise” program that would maximize my fitness, within my limits at the time. By exercise, I don’t mean running or doing jumping jacks, but maybe yoga and some walking.
The thought that they are recommending exercise as a treatment for CFS scares the hell out of me. Since I personally became ill with CFS after intense aerobic exercise, I will not be following this advice. Like AA said pacing is absolutely critical. If I use up the small amount of energy (dopamine) I have by exercising I will have nothing left for the rest of the day.
To those of you who suffer from CFS, have you ever had days when you have felt completely normal and have said to yourself, maybe, I could do some exercise? So you give it a try. At first you feel fine and think maybe I am getting better, but the next day you feel like you have a bad hangover, the flu or were hit by a Mack truck. Unfortunately, the small amount of endorphin making dopamine, that you had managed to restore in your brain has now been depleted and you are now “running on empty”.
The Canadian Consensus Document on ME/CFS which published a medical milestone, the first clinical case definition for the disease known as myalgic encephalomyelitis/chronic fatigue syndrome. This definition is clearly a vast improvement over the CDC’s 1994 case definition for CFS, which led to misunderstanding in both research and treatment modalities by making “fatigue” a compulsory symptom but by downplaying or making optional the disease’s hallmark of post-exertional sickness and other cardinal ME/CFS symptoms. In sharp contrast to the CDC’s 1994 definition, this new clinical case definition makes it compulsory that in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, circulatory, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria.
Page 4 of the document shows a chart of how healthy people and people with ME/CFS respond to exercise.
http://www.mefmaction.net/Portals/0/docs//ME-Overview.pdf
I enjoyed reading your comments on the PACE trial. My thoughts are that the Fukuda definition is also not good enough – we all know that post-exertional malaise is the main and defining symptom of CFS, yet it is only an *optional* symptom on the Fukuda definition. Yes it is an improvement on the Oxford criteria but it is nowhere near good enough in my opinion. Hope you are well, Adrienne, I enjoy reading your posts. x
“mental and behavioral disorders” is such a load. I agree with you in that the study is practically worthless. Having said that I have personally found walking on my treadmill 30-45 mins most days vastly improves my sleep which is key for me in restoring energy, reducing pain and clearing my foggy head.
How CFS was broadened… Downplaying the Hallmark Symptoms of CFS
“Activity/exertion response – In CFS, the hallmark type of fatigue experienced is very distinct. First, it is closely related to exertion response. People with CFS typically have an exacerbation of symptoms 24-72 hours after exertion.”
“However, according to the 1994 CDC CFS case definition, a diagnosis of CFS can be made in patients without this hallmark symptom should a researcher choose to do so. Researchers may simply chose from a set of symptoms which fits their whims and interests.”
READ MORE:
http://www.cfids-cab.org/MESA/adv9.html
Most patients would not have caught it and certainly it sailed right past journalists, but if you compare the registered protocols with the final endpoints it becomes apparent that the endpoints were substantially revised. Regardless of intent, the result was treatment appeared more efficacious than it would have been had the endpoints not been changed.
A detailed critique of the study — including problems not mentioned in this article — is here:
http://cfsuntied.com/blog2/2011/03/08/the-caa-and-advocacy-a-guest-commentary/
“The Pacific Fatigue Laboratory (PFL), in partnership with the Workwell Foundation, is a research, clinical and teaching laboratory focused on the functional aspects of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and other fatigue-related disorders. We aim to educate patients in conjunction with health, fitness and legal professionals.
Our goal is to facilitate an understanding of the biological basis for fatigue and provide objectively determined functional evaluations and therapeutic interventions that will improve quality of life for this population”. The PFL is located at the University of the Pacific in Stockton, CA. Staci Stevens is the director of the PFL and is a tireless activist to prove this is a biological illness. Here is her speaking in Washington, DC at the CFS Advisory Committee. http://www.youtube.com/watch?v=vqy4gVNh0rI
Well said Adrienne, well said. Thank you!
The problems with this study go way beyond the definition of the disease, though, as other commenters have pointed out, but I do agree that what’s most alarming about it is the way the media have seized on inaccurate assertional headlines as “the” “conclusion” from the study. The problem is that the subject is so complex, and requires a greater understanding of human physiology and biology than most readers possess to truly understand the entire scope. So the media dumbs the whole thing down, grabs a sound bite, and slaps it up as a headline. And readers are left with what they see as further conclusive “proof” that the disease isn’t really all that bad, or worse — it’s made up. (After all, if a disease can be cured by exercise alone, was it really a disease in the first place?)
it is not worth commenting on this stupid simon ‘the weasle’ wessely attitude…the man is phyciatric….he is a disgrace to the ‘medical’ profession…he should go back to school and learn physiology…what a total idiot….sincerely, aidan walsh southampton, u.k.
You know I really don’t get it. What is the purpose in continuing to beat a dead horse? A great many of us have already figured out the game plan these guys use (thanks to our many observers in the field such as Adrienne Dellwo). And yet it continues! They announce to the world that exercise is the answer like they just discovered the Holy Grail! They can’t have possibly have missed all the previous studies that do the same thing and flaunt the same flaw (properly defining the study group to target the most recent definitions of CFS and Fibro) can they? They can’t possibly be doing a good hour online without discovering this so why are they doing this?
In my mind it must all boil down to money. Someone is gaining something from all this. My first instinct is to think it is the drug companies. Maybe convincing us to exercise more is causing more flares and then putting more money into their pocket. Another group would have to do with the exercise itself. People who make and sell the equipment and possibly gyms selling memberships.
The thing that bothers me most is that the precious little money being allocated to study fibro may be going into this nonsense. Going into doing the same faulty study over and over again.
Am I just getting paranoid or do anyone else see this also!
Verrry well said! I think you ‘hit the nail on the head’. This is one of my concerns with some proposed treatment at the pain clinic. I think activity helps but there needs to be a very clear understanding that Chronic Fatigue Syndrome isn’t a psychological illness and that proposed treatments aren’t doing more harm than good. I get flare ups so easily from all sorts of things and this is a real concern especially when past treatments have been damaging. The latest advice I got from a doctor was to do aquacise. High impact exercise in cold water is not my idea of good advice for Chronic Fatigue Syndrome and Myofascial Pain Syndrome. I said physio / stretching in warm water might be a good idea and he looked at me as if I was coo coo. The government and the health profession really need to get a ‘handle on things’ because people are suffering terribly.
Having had M.E/CFS for 9 long years, I have tried GET and CBT, as a form of treatment and it does not work. I have relapsed with GET a few times. CBT, I was made to feel it was all in my head, I had CBT several years ago for anxiety and it does change your thought process in a positive way, but thats for anxiety/depression not M.E/CFS.
I struggle daily with pacing, as somedays I find I’ve found the right balance, I do the same the next day and then it’s boom, I’m down again. So this is a very difficult condition to manage.
I really enjoy your blog.
The study does not to bring any new light to this chronic illness.
I know most of us with CFS had the energy to excerise on a regular basis.
I’m a sufferer of FMS and I done all these exercise before I became severaly ill with FMS. As I have a degenerative impairement of my spine what I do these days and find it beneficial, is stretching. Very gentle strtching: 5 rises of my knee to my chest and count 20 each. Because the pain in my arms its terrible i do each leg alternatively. Then seating on the bed I do neck exercises 3 times on each side counting 8 – 10. Then my arms: holdinf my hands at chest level and pushing against each other 3 times counting 10-15. again with my hands supporting the oter hand rise them slowly over my head 3 times counting 8-10. By then I can’t do no more…and need to make a decision to get up or have 4 hours of truly restoring sleep?..Usually I get up and brave the day as I’m not so much in knots. Hope these suggestions may help some of the readers. Love & gentle hugs to all.
Nitalynn, you are bang on with your comments, but its neither the drug companies nor the gym that wants this, its the likes of Simon Weasely and the government who are coming out with this twaddle!
The problem is that there has been alot of news/reports on ME/CFS these past couple of years, all to the good for us, and so they’ve wheeled this barrow full of claptrap out to turn the media and public back against us.
They’ve done this so that they can save money, pure and simple. Weasley continues to get all of the funds/money for himself and his cronies.
Makes ME sick!
the nih already robbed chronic fatigue syndrome of over $10 million u.s. dollars and allocated into other research and not one of them was prosecuted but that is coming…they are under a criminal investigation and be assured heads will begin to roll…now another $5 million has gone into exercise in cfs and the majority of patients in this study have other issues and they are phyciatric not physical like cfs…that is now $15 million in allocated research funding that has been used in a fraud which is completely criminal…they did the same thing years back on aids funding but my great sources now tell me from within the u.s. justice department that criminal and liable charges are forthcoming and i am told a lot of them involved will even loose their homes and assets and get jail time…remember there are very serious people within the u.s. government and the justice departments who have cfids or children affected…if the likes of ‘the weasle’ wessely and the nih think they will continue to get away with their frauds and deceits the surprise is just around the corner and rest assured extradition will be given…sincerely aidan walsh southampton, uk.
i forgot to mention i had said in the past that i would show how my ’short synacthen test’ results came back each time… i got some very good news back from my endocrinologist and my test has really improved and my cortisol now rose to 498 and that he expects them to return to complete functional levels without replacement steroids anymore…i am now down for this month to only 2 mg. of prednisolone and next month i will go to 2 mg one day and 0 mg. the next day and stop completely the next month and then if all goes well i will be tested again in june and this time i am not to take 10 mg. of hydrocortisone for 7 days prior to testing…this time no meds at all and they expect my endocrine system will reach 530 to 550 and that is a very good sign…he even said that once my endocrine functions on its own my immune system should as well but a wait and see issue now… he asked me what i thought helped me reach this and i swear by the watercure protocol… http://www.watercure.com http://www.watercure2.org sincerely aidan walsh southampton, u.k. god bless all of you who are not well and please consider the water protocol…you have nothing to loose by drinking clean fresh water and celtic sea salt with ‘chlorophyl’ god bless all of you and to hell with the phyco-babblers…they can all rot in hell…
unfortunately I suffer from Ostio arthritus, damaged lungs (down to under 50% functionality) as well as Fibro myalgia and can hardly walk at the best of times, so telling me to exercise is adding insult to injury.
exercise is precisely how I first found out something was wrong with me. Everyone around me felt energized while I felt like a truck wreck, sore and in pain. Now this doesn’t mean I can’t do any exercise, it means that I must pace myself and be aware of my limits and not go over them. When I do this, I do feel better but I must always be mindful of those limits. That is the hard part but it is the sad truth I pay dearly when I am not mindful.
This exercise caper is a lot of bunkum!!I hate exercise of all kinds.If u can do a modicum of everyday tasks u should’nt need any more than this will give u as far as benefitting your body is concerned.I watched this con from the early 60’s and the only thing that is likeely ,is stress on your nerves and your pocket.I feel like a locomotive has hit me and come back to do a good job, after doing work, that is necessary,let alone choosing to do anymore.I do like swimming, but that makes me worse by far’Chest pain ,heartburn and indigestion fo days after.I have become supersensitive of late and am able to tell weather changes 4 days in advance,also intuition of major disasters.Christchurch, Japanese quake /tsunami and i feel many more to come in 2011 and 2012.Positive ions, magnetic fields seem to be changing etc,Also solar flares and activity affecting moon and earth .I think also overactive is as big a problem as low immunity too.
Dear Aidan Walsh, I wish for you good health, but please explain more here, or leave a link to more about you…. because, in my humble opinion, for those who are not as familiar with low blood volume and other symptoms of cfs/me as some of us are, your post could possibly sound like you have/had an endocrine disorder only and were dehydrated. Please forgive me if I offend, that is not my intentions.
Grace
I had a bit of a nervous breakdown last year, and found the skills I subsequently learned in CBT classes to be immensely helpful. CBT helps me deal with my life, which is of course always tinted with the fibro/CFS brush. I don’t know if I would go so far as to say it’s improved my CFS, though. I’ve had it for 12 years now, and I’m past believing anything will help it.
Many CFS patients do not respond well to graded exercise therapy (GET), cognitive behavioral therapy (CBT) or adapting pacing therapy (APT). But some do. My observation has been that there are multiple presentations of CFS and there have to be multiple treatments method. The result of the study is, that patients diagnosed with CF respond well to an exercise program. Some of my patients feel worse after any type of physical activity, but there are others who feel better. My impression is, that Adrienne is more opposed to the big headline, than the study itself. I also disagree in calling this study a big breakthrough.
@ Igor K.
I politely disagree with your impression about Adrienne’s thoughts. I hope to hear from her about this. I think it’s clear she is opposed to the way the study was carried out, and also the headlines.
I also hope I can remember to come back here and see what she says….. brainfog and short term memory loss, may keep me from remembering tho…..