What is it?
Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy have been the standard treatment recommendations for ME/CFS patients for a long time. So, what are these therapies? Here, we will first describe GET and then CBT.
Graded exercise therapy (GET)
What is GET?
Graded exercise therapy (GET) is a structured exercise programme that aims to gradually increase how long you can carry out a physical activity 1
In short, GET is based on the assumption that ME/CFS is caused by a lack of physical condition. The therapist will try to improve your fitness by gradually increasing your exercise.
The issue is, however, that anyone who knows just a tiny bit about ME/CFS will know that it is not caused by deconditioning. And that the patient will feel worse with exercise.
Why GET makes no sense for ME/CFS
One of the most common ways to get ME/CFS is from mononucleosis. Now, imagine that a young athlete contracts mono. After two weeks in bed the standard mononucleosis symptoms are gone, but the young athlete is left with debilitating neurological symptoms. The athlete got ME/CFS from the mononucleosis infection.
Now, is this young athlete already deconditioned from two weeks in bed? And can decondition even cause the severe neurological symptoms experienced with ME/CFS? Of course not.
It seems ridiculous that actual (influential) doctors can buy into that theory. It is incredibly frustrating and it has prevented patients from getting the medical care that they deserve. These are critically sick patients and incompetent doctors/psychiatrists make them do exercise. Sigh.
“One of the first thing physicians should do is stop telling the patient to go exercise. This is one disease you cannot exercise. If the patient’s telling you, they went out to walk to blocks and they would basically be in bed for a week and the patient was a marathon runner before, I think we would be a little foolish telling the patient to go exercise.” – Dr. Chia, infectious disease specialist
What is the PACE TRIAL?
Graded exercise therapy (GET) and Cognitive behavioural therapy (CBT) are based on very bad science (for instance, the PACE-trial).
After results of the five-year PACE trial were published in 2011, researchers claimed that graded exercise therapy (GET) and cognitive behavioural therapy (CBT) were ‘moderately effective’ ways to treat M.E. The study concluded that both these treatments resulted in the recovery of over a fifth of patients.
The trial has since faced criticism from other researchers, clinicians, patients and charities, including the ME Association, over how the results were obtained, analysed and presented.
After a long battle, unpublished data was released and independently reanalysed. The new paper, published in the journal BMC Psychology, found that the benefits reported from psychotherapy and exercise therapy are modest and not statistically reliable.2
However, the PACE trial has already caused severe harm because it has been implemented worldwide. Therefore, GET and CBT are often still recommended to patients worldwide. This may hopefully change soon, though, based on upcoming changes to the NICE-guidelines regarding ME/CFS.
NICE draft guidelines for ME/CFS about Graded exercise therapy (GET)
Change seems to be coming. NICE is finally making some good changes to their information about ME/CFS and its treatment. A highlight from the NICE draft guidelines:
“The committee reinforced there is no therapy based on
physical activity or exercise that is effective as a treatment or cure for ME/CFS”3
In the document, NICE define ME/CFS as a complex multisystem chronic medical condition where patients should avoid overexertion. Programs based on incremental increases in physical activity, for example GET, should not be offered for the treatment of ME/CFS.
“Do not offer people with ME/CFS: 4:
- any therapy based on physical activity or exercise as a treatment or cure for ME/CFS
- generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
- any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy
- structured activity or exercise programmes that are based on deconditioning as the cause of ME/CFS
- therapies derived from osteopathy, life coaching and neurolinguistic programming (for example the Lightning Process).“
Spotted a familiar program on that list?
Furthermore, NICE emphasises that cognitive behavioural therapy (CBT) is not a treatment or cure for ME/CFS.
Video about GET as a failed treatment
What professionals say about GET
- “We’ve seen too many patients that have gotten worse because they’ve been forced into physical therapy or an exercise program” – Dr. Chia, infectious disease specialist 5
- “As I understand things, the prima facie evidence is that, on the criteria used as outcome indicators in these studies, significant numbers of patients may be harmed by GET. In this context, I think it would be unethical to continue the development and use of GET.” Professor Jonathan Edwards 6
- The whole idea that you can take a disease like this and exercise your way to health is foolishness. It is insane. – Dr. Paul Cheney 7
- [I am] a doctor who has been bedridden with severe ME for a long period after [graded exercise therapy] GET caused a severe relapse from which I have not recovered… – Dr Mark Vink 8
- Patients remained severely disabled after treatment with cognitive behavioural therapy in a specialist clinic in the UK. Therefore, it cannot be said that cognitive behavioural therapy is an effective treatment for chronic fatigue syndrome. – Dr Mark Vink 9
- “As a physician bedridden with myalgic encephalomyelitis (ME) for more than a decade who is totally dependent on others, all thanks to a major relapse caused by GET, I am in a unique position to answer how harmful GET and cognitive behavioral therapy (CBT) really are. The basis of these therapies is false illness beliefs, meaning that it is all in the mind. These beliefs ignore all of the evidence that ME is a physical disease, such as intracellular immune dysfunctions, which not only restrict exercise capacity but also worsen with exercise.” – Dr Maik Speedy 10
- “I took the time to read everything that was sent to me about PACE etc. As a researcher in patient-centred care, I was and still am traumatized by what I read. A small group of clinicians realized that our colleagues were doing nonsense with patients all over again and that the evidence could not keep up with the speed at which clinicians were implementing exercise-based therapy.” – Simon Decary, physiotherapist and assistant professor of rehabilitation at the University of Sherbrooke (the lead author of the JOSPT editorial) 11
- “The more I looked into PACE, the more alarmed I became. Not only was the PACE trial a suitable example for me to consider, I found that it was a truly egregious example of how bad some mainstream psychology research really is.” – Dr. Brian Hughes, prof. at National University of Ireland, Galway.
- “The PACE authors should have reduced the kind of blatant methodological lapses that can impugn the credibility of the research, such as having overlapping recovery and entry/disability criteria.” – Dr. Leonard Jason, prof. at DePaul University 12
- I think that the single most damaging misconception perpetrated on ME patients is the idea that deconditioning is the problem and that exercise is the antidote. – Dr William Weir 13
Cognitive behavioural therapy (CBT)
What is CBT?
Cognitive behavioural therapy (CBT) is a talking therapy that can help you manage your problems by changing the way you think and behave 14
Sounds a bit vague when considering this is the most generally accepted therapy for ME/CFS, right?
CBT is used as a supportive therapy for patients with all kinds of illnesses. Supportive therapy is a key word here. It should never be the main focus when treating patients with a serious illness like ME/CFS but it is. The use of CBT for ME/CFS originates from the wrong assumption that ME/CFS is a psychological illness.
The Problem with CBT for ME/CFS
The problem with CBT is that it does not help anything for ME/CFS like some people claim it does (The PACE-trial). This would be like saying CBT treats MS or cancer. Again, it may be offered as a supportive therapy to help patients dealing with the emotional aspect of being sick, but that’s it. It should never be offered alongside Graded Exercise Therapy as the only treatments for ME/CFS.
Some of the proponents for CBT often state that ME-patients are too close-minded when it comes to CBT. In reality, patients accept that talking therapy can help with emotional aspects of being sick with any illness, but are distressed that they are not offered any real treatment for their biological illness.
What professionals say about CBT
- “It is time to downgrade CBT to an adjunct support-level therapy, rather than a treatment for ME/CFS.” – Mark Vink and Alexandra Vink-Niese 16
- “Consequently, CBT has no subjective clinically meaningful effect in nine out of every ten patients that are treated with it. Additionally, the subjective improvement in fatigue was not matched by an improvement in disability, even though the disability was fatigue related according to the researchers. On top of this, CBT did not lead to an objective improvement in physical performance.” – Mark Vink and Alexandra Vink-Niese 17
- “In summary, trials in ME/CFS, in particular those using therapist-delivered treatments, suffer from several fundamental flaws. The PACE trial was intended to be definitive for CBT and GET but suffers from the same flaws” – Professor Jonathan Edwards 18
- “Many CBT studies with people suffering from post-viral symptoms lack strict blinding and proper control groups – flaws that tend to inflate the chances of false positives. Still, the studies often fail to observe change on objective outcomes” – Dr. Jonas Kunst, prof at University of Oslo”.19
- “I find the silence of psychologists, particularly in the UK, concerning their colleagues diagnosing MUS and providing CBT for ME/CFS, which is known to be ineffective and even harmful, to be chickenshit and cowardly.” – Dr. James C. Coyne, prof. em. at Perelman School of Medicine. 20
- “Psychologisation, i.e. the exaggeration of the role of psychological factors when considering the aetiology and treatment of illness, can cause a great deal of distress to patients and undermine confidence in orthodox medicine.” – Dr. Ellen Goudsmit, health psychologist 21
In conclusion, the changes in the NICE-guidelines cannot be ignored. Hopefully, the stubborn therapists pushing GET and CBT based on poor results from flawed studies will eventually be completely outnumbered.
CBT can be a supportive treatment to any illness but nothing more. The evidence of its failure as a treatment for ME/CFS has been clear for decades. However, it seems that things may finally change now due to the growing demand for real ME/CFS treatment.
More reading about GET and CBT
- “Bad science misled millions with chronic fatigue syndrome“, – By Julie Rehmeyer
- “CBT/GET is ineffective and potentially harmful“, by Frank N.M. Twisk, Patient and literature researcher
- “Cognitive–behavioural therapy for chronic fatigue syndrome: neither efficacious nor safe”, by Frank N.M. Twisk
- “Cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective. Re-analysis of a Cochrane review”, by Mark Vink and Alexandra Vink-Nise
- “How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma“, by Steven Lubet, Williams Memorial Professor of Law
- “Studies and surveys implicate potential iatrogenic harm of cognitive behavioral therapy and graded exercise therapy for myalgic encephalomyelitis and chronic fatigue syndrome patients.”, Frank N.M. Twisk
- “What’s wrong with the PACE trial anyway?“, by Laura Elliot