ME/CFS and the MUPS myth
For a long time I didn't want to write about MUPS, for several reasons. Because ME/CFS is not a MUPS. Because I don't want to encourage the MUPS myth around ME/CFS. Because the MUPS myth bears witness to an unparalleled arrogance. Because... However, I notice it is time for me to do write something about it. Why? For exactly the same reasons!
What is MUPS?
MUPS is the abbreviation for Medically Unexplained Physical Symptoms. Solknet.com writes the following about this::
"Somatic" means "physical." Therefore, it is about physical complaints that can’t be explained by a medical cause, complaints that last longer than usual, that don’t pass, that get worse over time, spread to other parts of the body, or that constantly change. An explanation can be found in stress and everyday worries, although that isn’t always clear to the client. ” (consulted on 31 March 2019)
So far a fine explanation about MUPS. Indeed some people develop physical symptoms through tension, stress or trauma. These physical complaints are at least very annoying, and can sometimes be extremely painful, obstructing and/or disabling.
The symptoms manifest themselves physically, yet they have a psychological origin. That’s why a treatment focusing on the underlying psychological problems is the appropriate approach. The results of a MUPS treatment can be (very) positive in these cases.
But then the explanation about MUPS continues as follows:
"The symptoms are known by various syndrome names, such as hyperventilation, tension headache, neck pain, whiplash syndrome, rsi, chronic fatigue syndrome, fibromyalgia, being overstrained, burnout, irritable bowel syndrome and (lower) back pain." (consulted on 31 March 2019)
And here, in my opinion, the text goes seriously wrong. Because here physical symptoms with a psychological background are lumped together with chronic diseases with a physical background. That is an incorrect and misleading representation of things, misleading patients (and their allies). That brings hope for recovery to people in a vulnerable position, which is unrealistic. And as a "bonus" they’re also talked into a (psychological) cause for their complaints, which isn’t there at all!
This type of treatment by doctors and other health care providers is known as gaslighting, epistemic injustice and questioning. Gaslighting means one makes people doubt their memory, perception and mind. (We owe this word to the movie "Gaslight.") Epistemic injustice is the phenomenon that doctors don’t take our knowledge about ourselves seriously because it is seen as part of our condition. And questioning means that caregivers doubt our ideas, beliefs, etc. (amongst others because of epistemic injustice).
This is the attitude of the infallible Herr Arzt who is raised high above humanity wearing his white coat. An attitude that costs human lives through pure self-righteousness and arrogance. And not only in the case of people with ME/CFS; many patients have to face this.
The scientific literature is clear about this: MUPS treatments with CBT and GET have none to very counterproductive effects on people with ME/CFS (see the references below).
Statements such as the second quotation conceal at least two capital errors:
First, ME/CFS is a physical condition with a biomedical cause. This has been recognised by the World Health Organization (WHO) as early as 1969 (!). ME/CFS is listed in the ICD-10 as "disorder of the nervous system", with code G93.3. (By the way, fibromyalgia is a "soft tissue disorder", with code M79.7 and whiplash falls under "dislocation and sprains at neck level" with code S13.4. Both physical disorders as well.) But the Netherlands knows better and doesn’t recognise the recognition of the WHO.
The advice on ME/CFS from the Dutch Health Council of March 2018 is also very clear: "ME/CFS is a serious chronic disease that substantially limits the functioning and quality of life of people suffering from it." Still this advice isn’t yet included in a new or revised ME/CFS Directive.
It is extremely sad that a group of doctors and other health care providers continue to deny reality, with all the (sometimes disastrous) consequences for their patients...
Secondly, it is an unprecedented arrogance to state that if a doctor can’t find the cause, the cause should be psychological. Of course it may also mean that the doctor didn’t search well or omitted to ask further, or didn’t do the right examinations. Or a condition may be so unknown, complex or new that the correct examinations aren’t known yet and/or aren’t technically possible yet. And money is involved too: we don’t conduct certain investigations because we think the costs are too high.
It is particularly embarrassing that doctors can’t say "I don't know", and therefore say "I can't find anything, so your belief makes you sick."
In order to prevent doctors from making mistakes, the Handbook of Chronic Fatigue Syndrome van L.A. Jason et al. (2003) explicitly states:
If you fail to find any cause of disease, do not assume that the patient has a psychiatric disease or a school or work avoidance. Sometimes either your knowledge or the necessary technology has not been in place to make the diagnosis. Sometimes the patient's symptoms preclude easy recognition of the illness at that date. (page 27)
A large proportion of doctors also persists that ME/CFS would be one of those "vague disorders", just like fibromyalgia and Lyme disease, for example. What these doctors mean is that the symptoms of these disorders occur often, and therefore don’t easily lead to one diagnosis.
So, that has nothing to do with the alleged vagueness of ME/CFS! It has everything to do with educations that don’t adequately prepare future doctors for practice. It also has everything to do with criteria that are insufficient. The latter is to be (relatively) easily solved: better criteria for diagnosis are needed. And that brings us back to the advice on ME/CFS from the Dutch Health Council. This contains very clear criteria for ME/CFS, which only need to be adopted.
Waiting for doctors...
That is what we have been waiting for for over a year: the moment that doctors are willing to incorporate these criteria into their protocols. That requires willingness, and thát is where the real problem is. No MUPS, but simply stubbornness of a professional group that isn’t yet willing to trade in their prejudices for scientific reality...
Below is a (chronological) selection from the multitude of scientific publications and other research, which shows that the usual MUPS treatments with CBT and GET have none to very counterproductive effects on people with ME/CFS:
Black, C.D., McCully, K.K.. Time course of exercise induced alterations in daily activity in chronic fatigue syndrome. Dyn Med. 2005; 4: 10. doi: 10.1186/1476-5918-4-10.
Maes, M., Twisk, F.N.. Chronic fatigue syndrome: la bête noire of the Belgian health care system. Neuro Endocrinol Lett. 2009;30(3):300-11.
Twisk, F.N.., Maes, M.: A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS. Neuro Endocrinol Lett. 2009;30(3):284-99.
Kindlon, Tom. (2011). Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME (peer-reviewed). 19. 59-111.
Núñez, M., Fernández-Solà, J., Nuñez, E. et al. Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up. Clin Rheumatol (2011) 30: 381. https://doi.org/10.1007/s10067-010-1677-y.
Special issue on the PACE Trial van het Journal of Health Psychology, issue 9, aug 2017.
Twisk, F. Studies and surveys implicate potential iatrogenic harm of cognitive behavioral therapy and graded exercise therapy for myalgic encephalomyelitis and chronic fatigue syndrome patients. Res Chronic Dis 2017; 1: 13–4.
Twisk, F.N.M. (2017). An analysis of Dutch hallmark studies confirms the outcome of the PACE trial: cognitive behaviour therapy with a graded activity protocol is not effective for chronic fatigue syndrome and Myalgic Encephalomyelitis. Gen Med Open 1: DOI: 10.15761/GMO.1000117.
Vink, M., Vink-Niese, A. (2018). Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychology Open, 5(2). doi.org/10.1177/2055102918805187.
Wilshire, C.E., Kindlon, T., Courtney, R., Matthees, A., Tuller, D., Geraghty, K., & Levin, B. (2018). Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT. BMC psychology, 6(1), 6. doi:10.1186/s40359-018-0218-3.
Forward ME, Oxford Brookes University. Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes. Results of Patient Survey, 3 April 2019.