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The “X” factors of ME.

Since the publication of the Dutch Health Council we’ve had numerous articles in the media about Cognitive Behavioral Therapy/Graded Exercise Therapy (CBT/GET), the body and mind connection along with the psychological (and social) factors. I’ve already responded to an opinion piece by Knoop et al about the body and mind connection but I also wanted to respond to a narrative that has been plaguing the ME community for a long time. The questions are often; Why do patients with Myalgic Encephalomyelitis (ME) have such issues with psychological factors with regards to their disease? Especially the aversion towards CBT and GET? Which would be weird because psychological factors play a part in many diseases!? Now is that really the whole story? Do patients with ME really have issues with the fact that psychological factors could play a part in their illness? Do patients really not want any psychological treatments?

 

“Chronic Fatigue”

Now to explain the situation a bit, ME is a neuroimmune disease that, contrary to common misconceptions, is not characterised by chronic fatigue (CF), but rather by a severe exacerbation of symptoms which manifest (24 to 72 hours) after even minor physical or mental exertion. This hallmark characteristic of ME, known as Post-Exertional Malaise (PEM), can persist for days, weeks or be the trigger for a relapse or deterioration. ME has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder.

However in 1988 the CDC renamed the disease to Chronic Fatigue Syndrome and along the way new criteria has been created where suddenly chronic fatigue not only became the most prevalent symptom of the disease but where this symptom basically became a disease in itself. Three mandatory symptoms of ME became optional. Especially the hallmark of the disease PEM. By reducing the disease to merely fatigue it created a whole different condition from ME and most importantly it suddenly started conflating chronic fatigue syndrome with chronic fatigue. It lumped all kinds of conditions together where fatigue is an issue but that have very little to do with ME or CFS but referring to it as ME, CFS or ME/CFS. Honestly it became a hot mess.

From the moment ME became chronic fatigue (syndrome) psychiatry has had a blast with this disease. Fatigue has been a subjective complaint where pathophysiologically there is no real explanation for what it is exactly. So the reasons why someone could feel fatigued are endless. Sadly that explanation for “CFS” became a rather psychogenic one. If you look at a Dutch study from Vercoulen et al. the researchers believe that patients are overly preoccupied by their physical limitations, attribute their symptoms to somatic causes and have insufficient motivation for physical activity or recovery, which consequently caused them to worsen…right…

Patients can recover or heal if they can overcome their fear of activities .

The now infamous PACE-trial, which was the largest study ever for “CFS” used a similar kind of model. This model suggests that after an initial infection you will have physically started doing less. The disease is maintained by false or unhelpful illness beliefs. In other words, you are no longer ill and patients can recover or heal if they can overcome their fear of activities and that any PEM symptoms are just normal reactions of the body because you’re deconditioned, not a sign that you’re making things worse. 

It’s important to reiterate that these kinds of studies are about people with chronic fatigue as they use the criteria where the hallmark PEM is optional or worse, not even needed. So with this conflation of CFS and CF these studies say very little to nothing about ME or CFS yet these treatments are still being used worldwide based on these type of studies.

 

FFS.

CFS is often referred to as a Functional Somatic Syndrome (FSS). FSS is not a psychological disorder per se but if you read this article from 1999 about the perpetuating factors for why someone potentially stays ill, you do wonder if FSS is not seen a such.

Now the question for the latter is; Where is the actual proof?

“Four psychosocial factors propel this cycle of symptom amplification: the belief that one has a serious disease; the expectation that one’s condition is likely to worsen; the “sick role,” including the effects of litigation and compensation; and the alarming portrayal of the condition as catastrophic and disabling. The climate surrounding functional somatic syndromes includes sensationalized media coverage, profound suspicion of medical expertise and physicians, the mobilization of parties with a vested self-interest in the status of functional somatic syndromes, litigation, and a clinical approach that overemphasizes the biomedical and ignores psychosocial factors. All of these influences exacerbate and perpetuate the somatic distress of patients with functional somatic syndromes, heighten their fears and pessimistic expectations, prolong their disability, and reinforce their “sick role.”

So the rationale behind all of this is that “CFS” is a disease where potentially physical but clearly as well psychological and behavioral factors perpetuate the symptoms. Now the question for the latter is; Where is the actual proof?

The DePaul University attempted on 2 occasions to replicate the Vercoulen study and tested this model with five groups: patients who met the criteria for CFS, psychiatrically explained chronic fatigue, medically explained chronic fatigue, idiopathic chronic fatigue and patients with fatigue related to substance abuse. The Vercoulen model was successfully replicated for patients with psychiatric conditions causing the fatigue but not for the patients with CFS. So was this model really based on patients with ME or CFS? I don’t think so.

The PACE-trial and a similar study like for example FITNET tried to persuade people to overcome their “fear” of activity and the subjective measures showed, after post hoc manipulation of the data, some temporary subjective improvements nevertheless the improvements on the objective measures were non-significant and didn’t match the subjective measures. After a 5 year battle, under court order the PACE-trial authors had to release their raw data of this controversial study. The initial report publication stated that 60 % improved patients and 20% recovered in the Lancet. However, it turned out to just be a mere 20% who improved and only 7% recovered after a reanalysis of the original protocol. So again the proof that these treatments work is not really there.

CBT is used in various diseases, but when applied to multiple sclerosis, diabetes or rheumatism, CBT does not claim to be a cure. We are talking about a supportive form of CBT, but in the version recommended for “CFS” you are dealing with a “corrective” form which is supposedly “curative”. That is something entirely different. In addition, CBT is not the only treatment offered with respect to these type of diseases. Imagine that. By reducing the disease ME to just fatigue, they project the image of having a cure for the disease itself. That is not the case. Extreme exhaustion is only one of the symptoms as with many diseases. It is not a disease in itself.

What I’m reading is that many of the symptoms that are being described as excessive or dysfunctional are in my view rather normal behaviours for what you would expect with coming down with a disease. It’s a slippery slope because who decides what is excessive? That is something up to the clinician…

 

I’m not ok.

I’ve been thinking about my own psychological factors. Have my psychological factors influence my current state, which honestly isn’t very pretty. If you look at the hallmark of this disease PEM, when you overexert yourself you become so crazy ill for days, weeks or more you obviously will be more careful to not reach that horrible state again. I’m doing exactly just that. I’m trying to take as much care as possible not to crash too hard. I feel it’s a completely normal response. However in the PACE-trial fear avoidance beliefs, when it comes to exercise, that is considered to worsen the disease..

American neuroscientist Prof. J. Mark VanNess, Professor of Health, Exercise & Sport Sciences at the University of the Pacific, Stockton, California, who objectively measures PEM disagrees. He says the following; “It is a reasonable, knowledgeable, and learned response to a noxious stimulus. If ME/CFS patients could exercise away their symptoms they most certainly would, regardless of the pain. But that is not the case”. To ignore a symptom like PEM it’s like asking someone with a broken leg to start jumping on it. Or a diabetic patient to slowly increase their sugar consumption and build up their tolerance level. In my view that is completely foolish.

Prominent American psychiatrist Allen J Frances M.D. has been directing the fourth major revision of the Diagnostic and Statistical Manual of Mental Disorders. He criticises labeling physical symptoms as mental health disorders. In this article he and UK health advocate, Suzy Chapman feel that by mislabeling what are really just the normal emotional reactions that people understandably have in response to a medical illness as mental disorders, we are certainly creating more harm. This stigmatizes seriously ill people with an additional diagnosis of mental illness, just because they are worried about being sick and are paying extra attention to their symptoms. It is in my opinion, exactly what has been happening with ME.

I experience anxiety when my PEM crash is peaking and when I know I have to expend a lot of energy. For example if I know someone is coming over. It becomes so heavy and physically taxing for me that I really must pace myself for the big push, which is consequently much like getting ready to go on stage or hold a speech somewhere. With what is known about the energy dysfunction with ME on a cellular level this seems to be a completely normal reaction. By focusing on my bodily symptoms I researched them and I learned not to worry about these things as much. I educated myself about what my body is doing and I then try to deal with it accordingly. I consider myself at times a defensive pessimists and a chaotic optimist so my worrying before a big exertion seems rather beneficial to me in my own way. However if I were to listen to what these studies are implying I might start worrying about every thought and every type of behaviour.

During my adolescence as a student at the Royal Conservatory I was quite depressed. There were a bunch of things which needed resolving. My amazing director send me to the school psychologist. I think we kept seeing each other for about 1 year. He always scheduled me for the last hour so we could really talk. I always told him I had nothing to say to him. You know, talking about feelings and stuff. But the sessions always took much longer than an hour. During that time I learned that whatever I was feeling I was allowed to do feel. He boosted my confidence every time I went. In the second or third year I won an important prize destined for upcoming talent and with all these boosts of confidence I was able to get over my depression. Honestly that was the last time I really had been depressed. I now feel down at times because of the situation in which I find myself. It can feel at times completely hopeless and overwhelming but I do think that the therapy from my time as a student has taught that my feelings are allowed to be felt.

What I’m a strong believer of is that the body and mind, as seen with animals, are almost instinctively adapting to a disease which strikes them. Certainly our anxieties and cases of depression are not only rather normal but they might be of good use to us to learn how to adapt to the new situation. In my opinion we can rely a lot more on our body and mind but we are often taught that such is not the case. Right now my current situation is most probably seen as completely dysfunctional to the outside world, and honestly it is!! Yet my mental and physical state are, although that doesn’t mean I’m a happy bunny, in some odd way balanced and in that way I am kind of stable at the moment. It’s rather a miracle considering the disability that I’m suffering from. You never know, it could change tomorrow but for the moment…

 

The light version.

There is a newer kid on the block when it comes to the treatment part in the Medically Unexplained Physical Symptoms clinics. Some of them are promoting CBT that does try to keep you within your limits. It’s a softer approach. Try not to provoke a crash because that might exacerbate any “stress response”. This of course sounds a lot safer than telling patients who become ill after overexerting themself to push through it. However there is a catch. Although physically you might be told to stay within your limits, the idea that certain perpetuating thoughts and behaviours could be holding you back from full recovery is still persistent. The treatment is still focussed on a potential cure.

For me as an old man that is not such a problem. I’ll probably just shrug my shoulders and move on. but especially for the younger generations around 13 or 14, for them this can be quite damaging. If you know or if you’ve been told that some people recover and that there are certain thoughts and behaviours you can change to do so and it doesn’t work out for you, this can be a self-debilitating. Even if, with all the good intentions, a therapist tells you that it’s not your fault because for some it just doesn’t work. Who do you think the child or maybe a skeptical parent, doctor or teacher will blame?

I’ve talked to quite a few patients who had CBT when they were adolescents and are now in their thirties who to date still feel that they, somewhere deep inside are at fault that they haven’t really recovered. It’s not not only the pushing physically that they remember but the fact that in a way they were in control which in the end didn’t pan out. That alone weighs very heavy on them, so badly someone even tried to commit suicide. We’ve seen this also with the Lightning Process in Norway where a young boy of 13 tried to end his life because he felt he disappointed his family by not getting better. It is so deeply ingrained and I feel it is totally unnecessary. There is absolutely no proof for all these claims. Especially as there are criteria being used which do not assess ME patients well, as fatigue is the main characteristic of the criteria. But even if PEM is being used. What do you mean by PEM?? Becoming tired after exertion?? Is there anything being objectified??

 

Validate ME.

A great quote from a study from Stanford University by a Chu et al: “Contrary to some sources which have intimated that patients affected by ME/CFS are reluctant to admit the role of psychological or emotional factors in their illness and cling unreasonably to a biological cause for their condition, our clinical experience, supported by this study’s results, is that patients readily discuss such factors when their illness experiences are validated.”

I think in that quote lies the key. If you validate the experience of a patient, and do not attribute physical symptoms to dysfunctional behaviour, patients will open up in no time. If you were to tell patients with diabetes, rheumatoid arthritis or Parkinson’s to stop their treatment and offer CBT alone and tell them their psychological factors are the cause of them staying ill and that CBT can cure them, let’s see how open their response will be.

Studies have shown that the mental health of ME patients is similar to what you would expect it to be, with other somatic diseases, for example MS. This study reveals about ~40% on co-morbid mood disorders, which is equivalent to MS and other chronic illnesses. So with that 40% in mind, it means that about 60% don’t really experience any “disproportional” feelings, or rather such a “disbalance” that some of these studies might be suggesting. It is also a great indication why the hawk-eyed and one sided focus on psychological factors and treatments is so out of balance. Psychological factors, with or without a disease, will always play a part in someone’s life. However concerning the majority of the ME patients they are clearly just not that prominent. I, for example do not suffer from excruciating pain. It would be more than silly to suddenly start taking medication or other treatments for aches and pains. On top of that many of the psychological factors are actually somatic factors which have been turned into psychological ones. Way to validate that patient experience!

The discussions about if the body and mind are connected are in my opinion, obsolete. Of course they are. They are stuck in the same body. What do you expect?! I think that patients with a chronic illness are much more aware of their body and mind connection. Much like top athletes are similarly aware. It’s like preaching to the choir really. Yet that narrative is still being used as an argument as to why patients are against the current CBT/GET model. A silly non-discussion I would say, just like the discussion about the fact that psychological factors could play a part in a disease like ME. It kind of feels like a distraction from valid criticism, doesn’t it? Criticism that has reached far beyond the voices of the patient community.

I think it’s very important to differentiate between what’s been meant by psychological factors. Labeling normal behaviour and emotions that are considered within the range of what would be expected with a disease as thus dysfunctional or physical symptoms as psychological factors is missing the mark by many miles. I think it’s important to differentiate between CBT that is supportive vs CBT that is “corrective”and “curative”. Being that implicit about these terminologies, I find it to be very misleading.

It’s not such a surprise that the patient community has started rolling their eyes whenever they hear about the “psychological factors” 

By offering this type of psychological treatments we are not only closing the door to biomedical research, due to the fact that we have seemingly found a “potential cure”. We are, because of this, actually closing the door to actual (preventive) psychological support. And to make matters worse, we have already been doing that already for over 30 years with scathing detrimental effects. Suicide rates in this disease are sadly high. Patients are however reluctant to seek proper help because of the iatrogenic harm they can or often have already been suffering from.

In my opinion, it’s really not such a surprise that the patient community has started rolling their eyes whenever they hear about the “psychological factors” responsible for their suffering. How many diseases haven’t had the same treatment as ME? Tuberculosis, Multiple Sclerosis, Parkinson’s etc. These were all once considered diseases caused by or perpetuated by a patient’s psychological or behavioral factors. These theories were solely based on the beliefs of quite influential academics. That was the reason why these theories were considered true but as history taught us, they were completely unfounded. Just as we still see happening with ME. Something really needs to change and you know it will. The more biomedical research will progress, the more the current model for ME will evaporate. It will make room for proper psychological support that will be in line with what patients suffering from this disease do indeed need. I’m just not really sure why it’s not, at a persistent speed, happening as we speak? Seriously what’s the hold up?

I would like to close this blog with the fitting title of the reanalyses of the PACE trial which I encourage everybody to read. I think it’s clear that without a doubt we should start “Rethinking the treatment of chronic fatigue syndrome”.

Like…today!!!

Groetjes,

Anil ♥️

Editor: Russel Mohan

 

Anil van der Zee

Former professional ballet dancer, teacher, aspiring choreographer & photographer.
Currently life on hold; Myalgic Encephalomyelitis.
Blogging out of necessity.

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