Why should I care about ME/CFS research? Because I am a ME/CFS patient and that makes me an interested party. The quality of ME/CFS research will not only determine my future health, but also the kind of life I can have. After my relapse in 2008 and struggling without progress for more than a year when none of the techniques, diet and supplements that helped me before worked, I decided to catch-up on ME/CFS research during the Summer of 2009. What I saw didn’t make me happy.
What is wrong with ME/CFS Research?
I graduated as an Industrial Engineer Chemistry Option Biochemistry Specialization Biotechnology, nowadays it is called Master in Industrial Sciences in Biochemistry, and I worked most part of my professional life in ICT as programmer, data analyst, functional analyst and project manager. Why do I mention this? To demonstrate that I am trained in hard and exact sciences and that I have experience with analytical and logical thinking. I like information to be correct, complete and put in the right context. I find that the research and scientific publications on ME/CFS are lacking on all counts. Yes, I know that there are exceptions to the rule.
What is wrong with or lacking in ME/CFS research and publications?
- Diagnostic criteria
- Severity
- Available energy
- Ambiguity
- Funding
- Accessibility
The fact that most research is peer reviewed before publication makes it even worse. This means that the lack of quality control is widespread.
All percentages mentioned in this article refer to David Bell’s CFS Severity Scale. You will find all links in the Resources section below.
1. Diagnostic Criteria
ME/CFS is still mainly diagnosed via exclusion on the basis of diagnostic criteria. To make matters even more complicated there are several sets of diagnostic criteria: CDC, Fukuda, Holmes, London, Oxford, (South) Australian, and Canadian Consensus criteria. I even doubt that this list is complete.
Be it as it is, the least authors of a paper on ME/CFS can do to uphold the idea of a scientific publication is to mention the set of diagnostic criteria used to select the patients. Comparing the findings of study where patients were selected on the Oxford criteria and a study where patients were selected on the Canadian Consensus Criteria is like comparing apples and oranges.
2. Severity
The severity of ME/CFS can vary from being bedridden to leading an almost normal life. If a study or therapy requires patients to come to a CFS clinic the most severely affected patients (30% and lower) will be underrepresented if present at all, and the mildly affected patients (70% and higher) who have a (part-time) job probably will not participate as well. Whatever it is you are studying, any conclusions you draw will only be valid for a subset of the ME/CFS patients … and for a given set of diagnostic criteria.
3. Available energy
ME/CFS patients have a limited amount of energy that they can spend each day. I hope that any scientist, doctor, therapist, psychiater, care-taker, … realizes this. Energy spend on going to a CFS clinic is energy that cannot be spend on a walk in the park, shopping, cleaning, … If not I advice them to make themselves familiar with the spoon theory.
Take for example a patient who receives a realistic exercise program (to prevent muscle atrophy and to avoid post-exertional malaise) by a knowledgeable physiotherapist or doctor. Has the energy needed to go to the location for the exercise been taken into consideration? Suppose the patient has to cycle 15 minutes on a stationary bicycle and consider the following 3 situations:
- The patient can do this at home.
- The patient can do this at the local gym, only a 5-10 minutes by car.
- The patient has to go to a CFS clinic, 45 minutes by car or an hour and half by public transport.
In my opinion the location will have a great influence on the success of the therapy.
4. Ambiguity
The discovery of a new retrovirus that could possibly be linked to ME/CFS stirred up the patient and medical community. One would think that research to either confirm or contradict these findings would be pretty straightforward. Anyone who has been following up on the news since October 2009 knows that is not the case. Apart from patient selection (diagnostic criteria) there is also disagreement on the procedures and methods to look for this virus and this is supposed to be hard science.
A lot of ME/CFS research is based on soft science or even pseudoscience. Take for example the controversial therapies CBT and GET.
What is Cognitive Behavioral Therapy or CBT?
There are 2 hypotheses for CBT. The first hypothesis assumes “that the pathophysiology of CFS is largely irreversible, but considers that a fine-tuning of the patient’s understanding and coping behavior may achieve some improvement in his or her quality of life.”
The second hypothesis is based on “the premise that the patient’s impairments are learned due to wrong thinking, and considers the pathophysiology of CFS to be entirely reversible and perpetuated only by the interaction of cognition, behavior, and emotional processes.” Translation of the second hypothesis: it’s just between the ears.
If a study reports significant improvement or even completely cured patients after CBT are the authors willing to disclose the exact nature of the treatment, not to mention the set of diagnostic criteria used for patient selection?
What is Graded Exercise Therapy or GET?
Everyone has an opinion on GET, but to my frustration the type and amount of exercise is never mentioned, so it can mean just about anything. Exercise proved helpful to me for my first remission, but it wasn’t called GET, it wasn’t prescribed at a CFS clinic and the positive effects were on a longer timescale than mentioned in publications. Does a discussion pro or contra GET makes any sense without mentioning what the G, E, and T stand for?
- Therapy: Who developed the training program? What were their qualifications? Was it a personalized training program or a one-size-fits-all?
- Exercise: What was the exercise: yoga, weight-lifting, or cardiovascular?
- Graded: How was the initial amount (duration, weight) of the exercise determined? Did you have to increase the amount at fixed intervals or at your own discretion? Were you allowed to reduce the amount of exercise when it proved to much?
Most research on GET and CBT is highly questionable. Any improvements are usually for patients selected on the vague Oxford criteria. Some even say that severely affected patients, who might fit the Fukuda or Canadian Consensus Criteria, are excluded and that high drop-out rates aren’t mentioned to favor these kind of therapies.
Which just proves most statistic quotes. I will mention only one by Benjamin Disraeli:
“There are three kinds of lies: lies, damned lies, and statistics.”
Psychiatry and psychology aren’t hard science or even based on hard science which raises the question if they are science based at all. Any findings based on soft science are highly pliable. Which doesn’t mean that psychiatry and psychology do not have a place in healthcare, but they don’t deserve the aura of science based medicine.
5. Funding
I have no exact data, but it is my impression that most psychosocial clinics and research are government-funded while the biomedical clinics and research have to scrape by on private funds (donations, patient’s fees, …). This situation has remained unchanged for the last decade, and in some cases decades, after proven lack of results and after proof that the therapies provided at psychosocial CFS clinics make the patients worse. What ever happened to the “do no harm” from the Hippocratic oath?
Even in today’s economy with the budget cuts and with ever increasing proof for a biological/physical cause the situation remains unchanged. Unquestioned by civil servants of the Ministry of Public Health and unquestioned by members of Parliament. This leaves me flabbergasted.
6. Accessibility
A majority of ME/CFS research is done at universities or academic hospitals, which means that these organizations, the researchers, and the research is funded by the government with taxpayers’ money. Yet, as a taxpayer I have to pay again to gain access to a digital copy (PDF) of these publications in scientific journals.
Conclusion
When you combine the ambiguity of therapies like CBT or GET with the different sets of diagnostic criteria you can prove just about anything you want. This is not science based research, this is not even research. It’s fiction, it’s deceit, it’s fraud. Lies, damned lies.
A lot of ME/CFS patients write about living with this disease, but I sometimes wish that they would provide more information when writing about CBT or GET for example. If GET made you worse, what did the G, E and T stand for? If CBT was mostly a waste of time, money and energy; what was it, who were your fellow-patients, did you learn anything useful at all (coping and pacing)?
If we raise the standard in our publications on ME/CFS, surely the scientists/researchers will have to follow. Right?
Resources
- Myalgic Encephalomyelitis Society of America – Cognitive Behavior Therapy (CBT) and Graded Exercise Therapy (GET)
- NAME-US: Comparing the Fukuda et al. Criteria and the Canadian Case Definition for Chronic Fatigue Syndrome [PDF]
- Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners
- An Overview of the Canadian Consensus Document [PDF] - Whittemore Peterson Institute for Neuro Immune Disease
- Google for “statistic quotes”
- The Spoon Theory written by Christine Miserandino
- David Bell’s CFS Severity Scale
- Stock Photo: Lab Work via stock.xchng
| Data without context is just noise. |
{ 14 comments… read them below or add one }
Lots of great points here; thank you for raising all those important questions. I especially like the suggestion that patients who write about their experiences provide as much information as privacy concerns and comfort allow for. While science correctly asserts that “the plural of anecdotes is not data,” we patients who have to deal with the consequences of spotty ME/CFS research know that anecdotes (especially well-documented one) can still be very helpful to us.
The anecdotes, well-documented experiences of patients with GET and CBT, could prove helpful to make doctors and physiotherapists understand the problems patients have with these. If you are weak, and becoming weaker it is common sense that you should exercise to get back in shape. Alas, common sense isn’t helpful here; forced exercise makes things worse for us.
To raise awareness with doctors and physiotherapists simply stating “GET is bad” is not enough. You should specify what GET was for you. Maybe we would sound more convincing if we also start mentioning the things we CAN do instead of all the things we can’t. A lot of ME/CFS patients exercise: yoga, Wii, walking, …
If I would be a doctor or physiotherapist it would sound more convincing when confronted with someone with an “invisible illness” to also hear the things you still can do, it would give me something to work with and to check whether you are making progress or not.
Please REMEMBER that IF you are in the USA ME is called CFS. in Europe they are using the term CFS to demote you mainly to Simple “Chronic Fatigue” = 2 different but simplar battles.
If you actually HAVE ME/CFS GET CAN KILL YOU>>> it can Help FM and depressed patients.
CBT is basically psychotherapy aimed at helping patients learn to live with chronic illnesses.
If you have EVER studies any coping skills or psychology, the basics are the same..
What we REALLY NEED is MORE NOISE and Awareness not ONLY by the public, cuz they seem to make the LOUDEST Campaigns that seem to be HEARD by whomever their Congress/Legislature or Health Authorities.
If the USA can get Obama elected BY an email campaign of the people, and we can get Reeves kicked OUT of being in charge of CFS at the CDC, we must be doing something right…So as the song says….
Don’t STOP believing… and \Get Everyone you KNOW to BE more Active in this campaign… to get it OUT of the hands of the psych lobby.. there ARE medical bio-markers…Always HAVE been…
I can’t speak for all countries in Europe, but in several, including my own, ME officially doesn’t exist; it’s CFS. Regardless of the set of diagnostic criteria used: Fukuda or Oxford. I would like to see the Canadian Consensus Criteria used, but that is wishful thinking for now, it’s the Oxford criteria that are gaining ground.
That is why I stick with the “ME/CFS”.
Johan – Excellent overview and observations. I knew you were a brainiac the first time I read your blog! As you probably know, I have serious issues with CBT and GET especially for those like me who are at the bottom 30%. God, if I did one of those programs I would completely collapse.
As for the psychiatric perspective, I agree – those with this warped belief that it is ‘between our ears’ are most definitely ‘damn liars.’
Again, very nicely done!
Thank you, Dominique.
I know the potential danger of CBT and GET, but my problem is that all information and opinions on them is black versus white, there seems to be no middle ground. I refuse to believe that all CBT (based on the first hypothesis) and all exercise (whether it is cardiovascular, weights, yoga, stretching, whether it is 30min, 10min or even 5min, …) is bad.
I believe it could be helpful to make doctors and physiotherapists see our point view if you explain what GET was for you (type, intensity, duration), why it was bad, and what kind of exercise you can do on your own (yoga, walking).
Maybe it is my scientific background, but if one party claims GET is good and another that it is bad, there is not enough information in this yes/no discussion to form an opinion.
Johan,
I “absolutely” AGREE with you about the NEED for “some forms of movement that help circulation.”
It’s the being Vertical that causes stress to the heart. So If you are Horizontal and with resting in between and at a moderate pace.. using stretching and small ankle/wrist weights etc can be
absolutely necessary to HELP maintain muscle condition..so you do NOT decondition..
If you are having ANY symptoms of OI or POTS I would NOT do any vertical, weight lifting,
cardiovascular type exercises as that can harm you further… IMHO…and the same would
apply to yoga positions depending on your current OI or POTS situation.
We have been trying to convince Dr’s of these bits of info for only about 25 years now..
it seems WAY easier to start from thr “bottom -UP” and deal with the people that are
actually trained with the physiological therapists that deal with patients and SEE/FEEL
the results and usually PAY attention… therapists and practioners are usually more willing
to listen and they seem to be able to relate to the TRUTH.
I asked my 2 of my Dr’s for exercises I could do in bed 3 YEARS AGO and one of them
even shared a lobby with a physical therapy facility and yet they did have the intelligence
to walk across the hall and pick up a few sheets of “floor exercises.” Instead I have finally
had my God-mother who is in her 80′s mail me 3 sheets that he Dr provided her about
3 years ago… I don’t think the MD’s could be more DENSE if they tried….it’s MORE than sad.
The MAIN Rule to observe is to DO what your body says it can, but do less that you think you CAN
and repeat it later.. always PACE… and leave some energy in your tank, Tiger
Exactly, a bottom-up instead of top-down approach.
I already talked with 2 therapists, a gym teacher and several employees at a fitness center, but they admitted that they couldn’t help me with advise. Their training didn’t prepare them for this, and I should just continue with what I was doing at my own pace.
A lot of ME/CFS patients share their experiences with supplements and medication, maybe we should start sharing exercises.
Johan, I agree with your excellent analysis. I would add a seventh item to your list: standards of recovery. I have read papers that said a given treatment (frequently CBT or GET) led to recovery in, say, 68% percent of patients. But if they state their standard of “recovery” at all, it is sometimes as low as a 2% improvement in functional level, or barely more than a standard deviation. When you take into account the way ME/CFS symptoms wax and wane, that can represent nothing more than normal fluctuations of the disease.
For these studies to be meaningful, there needs to be a stated, measurable definition of recovery. And for the studies to be comparable, there should be a standardized measure of recovery.
However, I suspect that some of these studies could better be classified as pseudo-research. The goal isn’t so much to test the effectiveness of a given treatment as it is to legitimize a point of view. The goal is to get it published, so that you can then say “studies show…” And if the peer reviewers likewise are proponents of that philosophy, they can be very lenient in their research standards. That way they can cite the same flawed research in their own papers. Some of it is not so much science as it is an “old boys” club.
It reminds me of companies that pay for or conduct their own research, so that in their advertising they can say “Studies show Product X leaves you teeth 25% shinier,” or “Studies show that users preferred Product X 2 to 1 over the other leading brand.” Instead, we have people who run clinics that provide CBT saying “Studies show that 60% of patients improve with CBT.”
Excellent point, but I would add it to ambiguity.
Would like to get my hands on complete papers on GET and CBT so I could see it for myself and start picking them apart. All I find are abstracts, summaries, and opinions.
I’m so glad I found your blog today.
You write so well and intelligent about this very weird and confusing territory we are moving around in. I’ve been sick for 3 years and I find it hard to cope with, but now I’ve started going to a clinic in Norway similar to Himmunitas. It’s called Lillestrøm Helseklinikk, and they’ve found some interesting results on my tests, to say i mildly…
I also agree that some movement, some form of “exercise” is necessary, within the limits of course. For me that consists of some stretching and physical therapy at home. I’m also getting some cognitive therapy like how to cope with the situation, without any psychosomatic assumptions.
Hi,
I know that De Meirleir sees patients in Norway and has lots of contacts with other doctors and researchers. Is your clinic & doctor working together with him?
Until I got these extensive tests at the Himmunitas clinic my test results were boring; always negative. Since then some interesting stuff has shown up.
Coping and pacing are important. Some people learn it on their own via trial and error and others need a little help.
The clinic at Lillestrøm (just outside Oslo) used to have a cooperation with De Meirleir I think, I don’t know the full history there. Some say that they have learned from him how to treat us.
I’ve had the same experience with results, just some slight deviations here and there, now they are finding with these tests different things, inflammations, reduced immune functioning and all these stuff. Will have to see what comes out of it, I still have some tests to take and starting on some antibiotics this week.
FYI~ for anyone that DOES have any OI/POTS symptoms…
Here is webinar that has already changed my Quality of Life
as I have applied 3 of the suggestions that this Dr. talks about..
and Hello ~ this Dr is a fricken Pediatrition… that has Nothing
to do with ME/CFS…just that he’s had a lot of OI/POTS kids…
So Please share this video (even tho I’m NOT a BIG Fan of the CFIDS Assoc
this is the first thing they have produced that has actually helped me.)
I was just able to make my First trip out of Bed/Out of TOWN in 3 years
and I’ve had ME/CFS for 24 yrs now… so getting advanced..
and yes I’ve already had 10 years of counseling just on my own
because I knew my Life in general was requiring it..but that
ended about 15 yrs ago..but I’ve always loved Psych stuff anyway..
http://www.youtube.com/watch?v=5iF30TVLaRE
Please share this with anyone you know that has OI/POTS issues, OK?
Good luck to all of you…..
Good Luck to you ALL…..
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