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Neuro(logist)-M.E. Militant

 

The other day Dr. Jim Faas, insurance physician, lawyer, former President of the Association of Insurance Physicians (NVVG) and Senior Staff Officer at the Dutch unemployment office (UWV bezwaar en beroep), wrote a blog in the biggest Dutch medical news website Medisch Contact about the current situation of the PACE trial and Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) in general. Dr. Faas posed some great questions and his piece is truly a major development. Blog: Google translated / original version

Neurologist Emile Keuter, a “prominent” figure in the Medically Unexplained Physical Symptoms (MUPS) world, establishing MUPS guidelines in the Netherlands and a proponent of the CBT/GET model for M.E., wrote a response on Medisch Contact. He referred to the ME community as the “militant CFS/ME community”. He ends the blog by claiming that CBT seems to be reasonably effective against physical fatigue but not with ME patients and makes the suggestive remark by saying “You may guess why”. Below is my response. Blog: Google translatedoriginal version


 

 

Dear Mr. Keuter,

 

Emile Keuter, neurologist

Thank you for your blog. My name is Anil van der Zee, former professional ballet dancer and now bed-bound M.E. patient. Perhaps I even fit in with the “militant CFS/ME branch”. But more about that later.

Your blog actually starts with a hypothesis about what you think Myalgic Encephalomyelitis (M.E.) is or as you refer to it Chronic Fatigue Syndrome (CFS) and what might be perpetuating the condition. It’s a hypothesis because the evidence does not really exist. But okay. That is fine. No problem.

Then you switch over to Nijmegen. I assume that you refer to the Dutch Chronic Fatigue Knowledge Center (NKCV). If not, I stand corrected. You talk about Facioscapulohumeral Muscular Dystrophy (FSHD) and how objective progress was achieved after CBT and GET treatments. You have written about this in previous blogs and they appear to provide some interesting results. My only question is whether it was actually the CBT that was the reason for the progress, as you mentioned in your blog. Of course, the GET (AET) group did exercises, but also the CBT group. So was it really just a CBT body & mind thing, or was it really just because of the exercises as they had similar results???

 

What alarms me personally, and not just in this blog, is that you predominantly link M.E. to chronic fatigue (CF). As you may notice, I always say M.E. purely because I wouldn’t call fatigue, or let’s call it extreme exhaustion, my biggest problem. In addition, I think that the name CFS marginalises the disease.

The Institute of Medicine, IOM, wrote a report in 2015 attempting to change the name Chronic Fatigue Syndrome (CFS) to Systemic Exertion Intolerance Disease (SEID) to reaffirm that the core symptom of this disease isn’t CF, but Post Exertional Malaise (PEM), becoming more ill and an exacerbation of symptoms after a slight physical or mental exertion. Here’s a great explanation from Medscape.

The core symptom of this disease isn’t chronic fatigue, but Post Exertional Malaise.

Mr. Faas’s blog wrote about the PACE trial and how huge “errors” were made, or rather the post-hoc manipulation of data to get better results. However, this trial is not the only trial that suffers from these issues. The problem also happens here in the Netherlands and, in fact, in Nijmegen, which you refer to as a high quality institute specialising in CBT. Eek! The Dutch researchers are also known to be good friends with the PACE trial authors. Here’s a good blog about this issue by Dr. David Tuller who holds a position at the University of California, Berkeley. Part 1  Part 2, Part 3.

 

Apart from focusing primarily on only the results, there are a few additional aspects that I am particularly concerned about.

First of all in these studies, there is no or barely any distinction made between people with CF or people with ME or CFS. This is exactly like how I noticed that you actually only refer to CF when you say CFS. But that’s incorrect. It creates a very heterogeneous cohort where a portion of the participants do not actually have ME or rather no PEM since PEM was optional according to the criteria used in these studies, although PEM is the core symptom of this disease. So, if you use criteria where PEM is not mandatory, you would be doing the same thing as setting up a clinical trial for cardiovascular disease where a large number of patients do not even meet the primary criteria for cardiovascular disease. Wouldn’t that cause a major medical fiasco?

Another important point is that, while it is great that you mention results from a study on another disease, we have not been able to measure objective progress with ME with these kinds of studies. In fact, the objective measurements at PACE and FITNET have been omitted in the final results or have not even been released. Access Denied!! Recently, there was a new clinical trial called GETSET, by Professor Peter White et al. in which no objective measurements were used at all and where all the studies were open label. A major improvement was that there were no recovery claims as was seen in PACE or FITNET.

Getting more ill after exertion is atypical to what normally happens, especially to me as a ballet dancer. And if you continue to push and not listen to your body, like the therapies of PACE and Nijmegen suggest you must do, you will only continue to get worse.  Millions of patients worldwide, including myself, have experienced this. These are not the patients who suffer from only CF but rather the patients who truly have ME with PEM as the core symptom.

Fortunately, there is a real paradigm shift happening in America. Both the 2015 IOM Report and the Centers for Disease Control and Prevention (CDC) website emphasize Post Exertional Malaise and getting more ill after any effort with M.E. And CBT and GET are no longer recommended by the CDC as treatment. The Agency for Healthcare Research and Quality (AHRQ) actually decided not to accept CBT / GET studies and criteria based on the infamous Oxford Criteria anymore, where you only need 6 months of fatigue to get a “CFS” diagnosis, because there is no evidence that the results are really based on patients with ME and PEM. Also, the director of the National Institute of Health (NIH) wrote a blog about ME and PEM. Fortunately, a solution is being sought out through biomedical research which also actually affirms what patients have been saying for a long time – that it’s not a good idea to exceed your boundaries because it can cause (permanent) deterioration to the point of needing wheelchairs and being bedbound. Surely that’s not your intention, Mr. Keuter?

 

Finally, I wanted to discuss the “militant CFS / ME branch” – the branch of people who are accused of not only threatening scientists, but also stopping science from finding a solution for this disease. I am homosexual and a ballet dancer with ME, and as a gay man, I am baffled by the treatments of both. Obviously regarding the stigmatization, but even more so that therapies were used to “cure” people of their homosexuality. In the year 2017 in the Netherlands, this is generally regarded as madness. How could this have ever been possible? But still it happened and in many places around the world this is still done. Unfortunately, even here in the Netherlands.

 

The similarities are also seen with ME. ME is not the first disease this has happened to. Just look at M.S., Parkinson’s, Tuberculosis or stomach ulcers. But history keeps continuing to repeat itself. While for me as a ballet dancer, who is highly aware of what their body should feel like, this does not match at all what my body is telling me.

 

Professor Steven Lubet wrote a really great blog about this issue and about a lecture by psychiatrist Michael Sharpe, one of the PACE authors. Mr. Sharpe also complains about the militant M.E. patient, but here too, history seems to repeat itself.

After many protests of “militant homosexuals”, homosexuality was only removed from the Diagnostic and Statistical Manual of Mental Disorders(DSM) in 1987, and homosexuality was no longer seen as a mental disorder. A good sentence from the blog is this:

 

 “Many leading psychiatrists no doubt considered the protests as harassment or even anti-science, but in fact they were simply pro-humanity.”

Steven Lubet, Williams Memorial Professor at the Northwestern University Pritzker School of Law

 

 
It therefore seems to me quite inappropriate to accuse patients of militia while they are in fact voicing well-founded criticism, and here too mostly on the role of psychiatry.
Remarkable is that, as Mr. Faas wrote, the court ruled that the claims of threats were exaggerated. Trudie Chalder, one of the main authors of the PACE trial, under oath finally admitted that those threats had not happened.

What purpose does blaming patients serve? I think the only thing patients are asking for is to get better, and for humane treatment, i.e. pro-humanity. With the current CBT and especially GET treatments and attitude of science that supports these therapies, that won’t happen because the current models are just completely flawed

 

 

It is slowly getting increasingly painful to read that clinicians and scientists still claim that ME is in some way a behavioral or psychological problem. Not so much for the patient but rather for the clinician. If you look at all the studies (9000 at the time of the IOM report) there is simply no evidence that this is a disease due to psychological suffering or that it can be solved by behavioral interventions.
You clearly seem to have a different opinion. So how long can you keep this up? There is absolutely no basis for it. According to Wilshire et al., the claim that patients can recover through CBT and GET is not supported by the data and this claim is highly misleading to clinicians and patients considering these treatments. Absolutely, it is not supported by the data (either subjective or objective) of PACE or FITNET. Data just does not lie.

 

So in order to answer your question of why CBT doesn’t work for ME, I immediately thought of Professor Simon Wessely, a British psychiatrist and a sort of founder of the current CBT and GET model for ME. He explains that ME patients, compared to other illnesses, respond worse to CBT’s placebo effect, probably due to their expectations and skepticism. However, in other medical conditions such as MS, Lupus or Rheumatoid Arthritis, there is no claim that the treatment cures the disease, as it is still the case with ME. If hospitals (again) would start promoting CBT as a cure for these diseases, wouldn’t these patients be as skeptical and have low expectations too??

 

It is clear that the “militant” ME patient is no longer alone in this fight. Because it unfortunately is indeed a fight. I think the idea that only the patients are waging war is over. Here you can read an open letter to Psychological Medicine signed by more than 100 scientists and patient organizations. Patients and scientists are capable of seeing eye to eye just fine, there is no problem there.

Millions Missing protest 2016, The Hague, The Netherlands

So my question is: are you sure the problem is with all these millions of patients worldwide who indicate that these therapies do not work? And do you also feel the problem lies with those top scientists who now share the opinion of the patients? Or is it time we take a more critical look at the scientists who still claim that these therapies work despite evidence of biomedical research and data that does not lie? Why do these scientists stick to these unproven and debunked hypotheses? To me this seems more a problem of the scientists themselves than the patient? Why do they subject people and children who are very ill to this? I have some thoughts on that. But let me put it in your own words. “You may guess why.”

 

Sincerely,

 

Anil van der Zee  

Anil van der Zee

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

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  • Medea

    your work to create awareness is invincible Anil! thanks again!

    and after reading dr. Keuter’s blog and your door-opening and heartfelt response, i’m starting to wonder who could use CBT, or at least some changes in their cognitive patterns, the most; all those ME-patients who keep their minds open, searching for answers, and resiliently try to cope with everyday ‘life’ (as good as it gets) in the absence of a cure? who are informing their doctors as well as the rest of the world about crucial new developments in medical science on ME, while getting labeled with a mental incapacity or unwillingness even to get their (healthy) lives back with an exercise therapy (GET) that doesn’t improve their condition, but destroys their bodies even further?
    or, could some cognitive changes perhaps be fruitful for those doctors who claim/are convinced to have found the answers decades ago, and stick to them while choosing to stay ignorant of the fact that, all these years, patients with ME physically get worse from their treatment, and ‘shushing’ them whenever they speak up.

    to break old thinking patterns and stop holding on to theories on GET/CBT as a treatment for ME, will create more room for fruitful new knowledge about this illness. it might help ‘cure’ at least the ignorance. and hopefully, give room to help cure the illness itself.

    “wonder is not a disease. wonder, and its expression in poetry and the arts, are among the most important things which seem to distinguish men from other animals, and intelligent and sensitive people from morons” (alan watts)…

    wisdom starts with wondering. if not GET and CBT, what COULD cure ME? i believe good (medical) science serves to understand things, and that involves wonder. i hope your response to dr. Keuter will be a great inspiration for doctors who are still stuck in old thinking patterns on ME.

    and to dr. Keuter: if millions of ME-patients fail to get better, don’t blame the patients, but take a second look at the treatment. and don’t just guess, but start to really wonder why.

    • Anil van der Zee

      Super well written, thank you.

  • AndyPR

    Brilliantly written Anil, a fantastic response.

    • Anil van der Zee

      Thank you very much Andy 🙏🙏

  • Daniel

    Thank you Anil for making the effort to write such a thorough letter in support of the ME community worldwide. Being an ME sufferer myself I greatly appreciate and understand how difficult and energy sapping it is to carry out such an effort so I commend you very much for doing so! Writing this response is not easy for me either I must tell you as I try to express my thoughts clearly and battle the brain fog and quickly decreasing energy levels that were already very low to begin with! Advocating for better treatment for sufferers of this illness is a global struggle for all ME patients who desperately want their lives back and struggle every day from this cruel disease. And it is because of these daily struggles that ME patients endure that it really is an added indignity to be accused of inappropriate behaviour when all we are asking for is to be listened to and treated fairly by the medical community. This is a nightmare illness and being chastised by medical professionals only increases the difficulty of living with ME.

    The point you make regarding Post Exertional Malaise (PEM) is a really important one. Without PEM it is not ME. Doctor Anthony Komaroff, Professor of Medicine at the Harvard Medical School and member of the Research Advisory Council to the Solve ME/CFS Initiative (SMCI) has stated in a recent webinar hosted by SMCI that PEM is one of the cardinal features of ME/CFS. He states that you don’t see PEM in other illnesses. He describes PEM as when a physical or cognitive exertion causes a flare up of symptoms. This flare up in ME/CFS he says does not happen immediately but typically 12-48 hours after the exertion and he goes on to explain in detail some of the possible reasons why the body reacts like this. I would encourage anyone who would like to learn more about this illness to listen to this webinar that provides great information about this complex illness. The following is an address for it : https://www.youtube.com/watch?v=ENrdrGj0p-c

    There are serious systemic problems in ME sufferers and it is not ‘militancy’ to claim that certain treatments such as CBT and GET are not effective and also can be harmful, particularly in the case of GET. It is just a reflection of the reality of the illness and how serious it is that even mild exertion brings serious physical consequences for the patient. Hopefully more health professionals will begin to realise the stark reality of ME, will ditch the MUPS diagnosis and will join the patients and scientists who are already on board in our quest for effective and appropriate treatments.

  • Firestormm

    Anil,
    It’s brilliant. Well done my friend. Well done indeed.
    Russ

    • Anil van der Zee

      Thank you very much Russ ❤️🙏

  • Adam Lowe

    Wonderful. This feels just like psychologists’ past attitudes to LGBT people. It still happens for trans people–they’re dependent on psychologists for their treatment and gender recognition. Thankfully, even the current government appears to want to change this.

    I do wonder if psychologists, finding that people aren’t the repressed masses they were in Freud’s time, are simply desperate for more work, so create it where there is none? Like Freud, many of them project their own biases onto us–assuming everything is psychological because it validates their practice. Also like Freud, they do a lot of damage.

    CBT is only half as effective as it used to be. Two-thirds of studies conducted by psychologists aren’t repeatable. Mindfulness and meditation are on the rise. Are they feeling left behind?

    • Anil van der Zee

      Thank you for your comment, super well written. I agree that a lot of damage has been done. But it’s not just because of the CBT or psychologists perse. As you’ve already mentioned that in this case the CBT is considered curative and that although there is no proof with manipulation of the data they make it look as if there is. The same could happen with mindfulness and meditation. We see quite a few studies claiming results that are overhyped and overstated.
      The best solution would be that if the objective measures do not show any improvement ditch the study. No publication 😀🤘

  • Scott Simpson

    Excellent post Anil. Keep after that militant physician as he’s a disease denying insurance shill. His accusations toward sick and disabled people seeking to stop harmful treatments exposes his true personality. Frightening for all he has power over.

    • Anil van der Zee

      Thank you. Sadly this is the climate we are living in the Netherlands. But it’s slowly changing. This is a sinking ship. Good times 😀

  • A. Boon

    Jammer dat Emile Keuter schrijft over het Chronisch VermoeidheidsSyndroom, zonder dat hij werkelijk weet wat het inhoudt. Ik zou graag aan hem en revalidatie artsen willen uitleggen waarom CGT met opbouwen van beweging niet werkt. Ik heb ervaring als patiënt, en merk tijdens structurele fysiotherapie dat mijn ‘sport’ niveau stabiel blijft en niet echt vooruit gaat. Terwijl ik behoorlijk sport minded ben. De afwijkingen en oorzaken van CVS worden hier ook niet beschreven. Maar die verdwijnen dus niet met sporten. Over CGT kan ik nog zeggen dat dit bij CVS totaal verkeerd kan uitpakken, met name door het onbegrip van artsen en hulpverleners over de ziekte. Zolang dit zo blijft, weet ik van mezelf dat ik zelf mijn beste coach ben. Onderzoek dat zou aantonen dat CGT met opvoeren beweging werkt voor CVS, is gemanipuleerd. Heranalyse heeft al uitgewezen, conform theorieën over de ziekte CVS, dat overmatige inspanning en de therapie CGT niet werken voor CVS en zelfs een averechts effect kunnen hebben.

    • Anil van der Zee

      Mee eens 😀

  • Lynn Twohey

    Wonderfully written. Saving your response. Going to show my doctor. Thanks for all you do.

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