Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

I take your point that Wessely and co often seem to be playing a language game around psychosomatic/functional/MUS/etc... but they have been playing this game and I think that means that it's a mistake to just use the 'psychosomatic' label to apply to all their work/treatments when they haven't been explicitly using that label themselves.

I appreciate that here you're just chatting informally on a forum, but I don't think that there's a quote from NICE saying something like "NICE diligently avoids language that sounds psychosomatic because there are zillions of studies that show this terminology makes patients mad". I think that we're best off only making claims that we have clear evidence in support of. I've seen so many ME/CFS advocacy efforts go wrong when someone just starts speculating about things that we cannot know for certain, and I think it's better to try to take a cautious approach with public claims (I know I can slip up on that though).

Maybe not PACE bad, but there still seem to be a lot of worrying problems. Things like this study still semi-regularly pop up to claim chocolate/whatever can help treat ME/CFS: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3001690/. And beyond that, there's a problem with clinicians on the edge of CAM promoting biomedical treatments to patients that are supported by even weaker evidence/none.

It seems that there are a lot of people happy to try to build a career by exaggerating their own expertise and ability to help desperate patients. Having said that, a lot of the problems around informed consent and ME/CFS do seem to relate to medical professionals stigmatising attitudes towards mental health problems, and the assumption that those viewed as suffering from a mental health problem are less entitled to decide on their own health care than others, but I think that this issue is a bit of a mine-field for us, which would ideally be tackled very carefully and relying on direct quotes from those being criticised.

I feel that simplifying matters into a psychosomatic vs biomedical issue is probably going to be harmful for efforts to improve the way patients are treated. It means we're more likely to be dismissed as just being ideologically opposed to psychological approaches to ME/CFS, but also, if we focus on those labels rather than the details of the problems then it makes it easier for the biopsychosocial lot to just change the labels they use without really addressing the problems.

 

you mean it can't? damn!

 

Your concerns about medicine are well-founded, I think, though there's so much substantial medical research on ME now. I'm so encouraged by that change.

I'm not sure what I can say to the suggestion that I'm speculating about things I don't know for certain, that I don't tackle these issues carefully, or do not rely on direct quotes. Holy cow. Honestly it's hard for me to understand how anyone could think this is possible. I'm not writing social media posts. These are single-author, peer-reviewed articles in top journals. No one could publish these things without very substantial expertise in the history and methods of psychosomatic medicine. It's quite bizarre that I keep having to say that on this forum. This would never be necessary in academic settings.

I'm not pulling rank, and I truly don't care about getting credit - but I think advocates get used to the idea that anyone who takes a stand for medical management of ME must not be professionally credible. That's not the case anymore! I do know how these guys are thinking, because I've studied psychosomatic research in a rigorous way for so many years.

Try the BDS paper, which presents an extensive defense of what I suggested above about the psychosomatic/biomedical divide. (So citation heavy that it's a great sleep aid!) I'll attach a link. For what it's worth I'm not seeing how the combative skepticism serves the cause, or the collective spirit of the group. I'm an ally.

https://docs.wixstatic.com/ugd/23f4ba_ae3ffbf6ff614c669f1e6ad9420a2dc9.pdf

 

@Diane O'Leary

I really, really like what I've read of your writing. I hope you don't decide we're all too prickly and defensive and go off and leave us to stew. We need all the allies we can get.

 

I just read the link and while i agree the real issue at hand is that the PACErs believe ME/CFS is psychosomatic so to them there is no risk whatsoever in forcing patients to endure treatments and when they get worse they just deny what their eyes and data tells them and manipulate their data to get the result they believe is true. To them the ends justify the means because their religious level of faith in CBT/GET simply cannot be wrong.

From intimidation of dissent (link) to creating more fraudulent research their goal is to cure us by imposing their will on patients and even locking us up in order to "fix" us. Or arrest/criminally charge parents because they are faking ME/CFS in their children (since its a psychosomatic disease). They never question why forced treatment keeps failing and instead blame the patients who they have purposely harmed permanently.
They fear scrutiny of their work and biomedical immune research but once we have a disease mechanism or treatment their house of cards will shatter. Much like it did in MS, Narcolepsy or countless other disease that were once considered psychosomatic

 

Doesn't stop me from trying. The way I see it is that if 1 ounce per day doesn't cure, that doesn't mean that 2 ounces won't. If not 2, maybe 1/4 lb will do. If you don't try, you'll never really know. You just have to commit.

 

I used to eat 1 lb chocolate bunnies at easter. Never seemed to cure my ME but maybe i needed to go to 2lbs

 

A tilt table test does not prove orthostatic intolerance. Orthostatic intolerance is a symptom - it means 'not feeling well on standing up', nothing more than that.

Postural orthostatic tachycardia is, in contrast a physiological response, but not necessarily one that causes OI. Some normal people without OI get increased heart rate.

'POTS' is a speculated 'syndrome' tha implies some as yet unknown common mechanism for POT.

So it is complicated.

If there were good studies that showed an abnormal physiological response in PWME that correlated with OI then that would add to credibility. The problem is that tests like tilt table are mostly used by physicians who have not done reliably interpretable studies and as far as I know there are still no reliable studies that actually show a mechanism/symptom correlation specifically in ME.

The problem with this is that it actually decreases credibility in the eyes of the medical profession as a whole. Anyone who has had a tilt table test will be seen as one of those people with funny ideas about their illness who visits a fringe physician.

So none of this makes it sensible for a tilt table test to be standard for assessment of ME in a NICE guideline.

If someone has disabling OI then further investigation may be useful but I am not sure anyone has shown a tilt table test to be useful - largely because nobody has formally shown any treatments to be safe and effective. The treatments recommended for OI look to me to be very questionable. Small doses of mineralocorticoid are likely to produce long term side effects. Intravenous saline is I think a physiological nonsense.

So I am not convinced tilt tables are a good idea. Their main effect is to reinforce the BPS story that patients have funny ideas and visit fringe doctors I am afraid.

 

But the justification for the symptoms in the BPS model is that they arise from deconditioning secondary to the beliefs. If that were not so then there would be no need to do GET. A better approach would be a three day course of getting psyched up and standing on bits of paper - showing that there was no deconditioning and you could run a mile straight away. The Norwegian mindfulness study seems to show that some people can. So the whole thing is like grasping at eels.

 

Not necessarily, GET is a type of CBT and does not have to be based on reversing deconditioning, but simply to alter beliefs about activity and exercise (eg expectations of symptoms from doing exercise). Whether this is successful is a different question

 

I think it is important not to see all this is black and white (or White and Black maybe!).

I have no doubt all sorts of people made suggestions last time but the decision was made by the committee. White was not in a position to 'get things changed'. I don't remember what it says about wheelchairs in the 2007 version and I don't know if we know what was changed to what.

But even if we do, discouraging use of wheelchairs is not an indication of a psychological approach that denies a physical approach. Discouraging wheelchair use is a standard part of management of lots of very physical locomotor problems. The most obvious is childhood arthritis. If a child is allowed to sit in a wheelchair or buggy all the time because they are in pain, or very likely because parents incorrectly think it is best to minimise painful movement, they are likely to end up with permanent contractors that will make it impossible ever to walk.

Discouraging wheelchair use is part of a very valid overall approach to the patient that takes into account natural motivations that can sometimes be counterproductive. Physiotherapy programmes to keep people with MS mobile similarly make a lot of use of encouraging the patient to do things that do not necessarily seem desirable to them at the time.

We have no evidence base that says that preventive resting is good for ME. We know that activities can provoke symptoms but that does not tell us about the best long term strategy.

 

If someone spends 3+ months of hope, time, effort and money on some sort of involved therapy and it doesn't work, while this might not be considered a serious adverse effect, they have still been harmed.

 

There was a time - not long ago - where the divide psychosomatic/biomedical was clear, even in the population, but today psycho-stuff - esp. psychosomatic - is so en vogue. Everything is psychosomatic today, even things that aren't because psyche and body are one. (Which is not the same as saying brain and body are one because the brain is part of the body.) If you deny the inter-relationship and one-ness of body and soul, people roll their eyes and call you dumb.

I know the anti-psychiatric movement (which wants a "humanistic psychiatry" instead of the psychiatry of today that works with force and violence, with a few exceptions that show that it could be different) is unpopular today, but these organisations stress again and again the devide between psycho(somatic) and (bio-)medical, which follows directly from the definitions of both. Psychology may have changed their definitions in order to create an intersection of medical and psychological, which is arbitrary and leads to confusion, to the advantage for those who want more psycho and less biomedical.

 

One of the mums on a parents forum pushed for 3 years re OI. She is now a bit of an authority on the subject. In paediatrics in UK comorbidities such as this are simply not investigated, despite symptoms being present ( there may well be exceptions, however the default is no action).
A well known paediatrician was involved early on in care which made things worse.
Tilt table testing has been done at paediatric transition after securing a specialist referral (after a private consult)- the team carrying it out were smiles at the start and ashen faced when they had the results. POTS is a major part of the illness profile for this young person. With medication, the quality of life has been significantly improved (better education options are also being accessed).
To me this sums things up - even when there are clear symptoms present, the cognitive dissonance fostered by years of a particular mindset, denies treatment for some/ most.

 

I don't think it is simplifying. Saying things as they are is the prerequisite for change. Saying things as they are is difficult because it will always create turmoil. Those who are affected will fight back because they view it as an attack if things are spoken out clearly.

Of course, it's not solely psychosomatic vs. biomedical, as Diane O'Leary said herself, but it's an important aspect.

 

I thought that was clear.

 

We have no evidence base that says that preventive resting is good for ME. We know that activities can provoke symptoms but that does not tell us about the best long term strategy.[/QUOTE]

This may be a little theoretical, - words and terms, but we do know how important words can be. Preventive resting could be defined as some sort of rest before getting “bad” short term, that also could affect long term outcome. One could imagine that preventive rest could be an option for new ME-patients and/or very mildly affected patients (if that is possible?). Then it becomes really hard. Rest in itself will never be a solution. But I think it’s fair to say that a common thing among patients that have had bad long time prognosis, is that they didn’t do anything properly in the early phase. That’s a combination of factors like no advice, to strong will, pushing on, everything but preventive rest. But it is sadly true, that we don’t have an evidence base to back this up, other than patients surveys which is of scarce value in the era of EBM. Not saying surveys are knowledge as good as anything, but it is of value. Don’t know if possible to even set up such study, but it would be interesting to see a study of patients initial phase activity and long term development.

Its my opinion, solely based on personal experience and surveys, that some preventive resting early on could be valuable long term for pwME. But that is an absolute invalid argument in a world where movement is holy from cradle to grave, which I do appreciate, but could need some modifications and nuances sometimes.. I have no belief that medicine will take the slightest of preventive rest into consideration before having a biomarker that tells us clearly that “hmmm, maybe some rest could be just vital early on”.

Then - for the majority of ME-patients that’s been ill for some time, it is not at all about preventive resting. It’s an important point, because I do think to many doctors think that all ME-patients (new and long term) have this false beliefs of resting before “bad”, then deconditioning in both mind and body. But there is no such thing as preventive resting for long term patients with an unimaginable bad baseline, which is common for ME-patients. For long term patients rest is a direct response to PEM. This kind of rest is no long time solution to anything, but still the only possible option for getting “back” again, which means absolutely nothing, other than not being bedbound 24/7. There is no such option as preventive resting for long term patients, but yes rest after PEM and with some minor restorative effect. That kind of rest is about day to day management.

The problem is that many long term patients live in what can be classified as some sort of permanent PEM-state, which do require what can be seen as preventive resting, but it’s not at all like that.