UK: Physios for ME

I would echo Trish's caution. Essentially nothing is known about the pathophysiology. The CPET studies do suggest some difference in metabolism in the context of exercise but I am sceptical that they tell us anything about PEM. I certainly do not think any conclusions can be drawn in relation to clinical practice. The biggest problem we have is people applying theories to clinical practice when there is no justification. If physios need a single message I think it would be that they should make a clear decision not to do that.

 

Effectively 'the' defining statement of 'where we are'. Pretty grim after what should have been 60 years of meaningful research, but good science frequently starts with the honest admission 'we haven't got a clue', so we can be hopeful.

 

@InfiniteRubix

This is why I'm unhappy about DoctorswithME using "neuroimmune"


What is wrong with stating we don't know because of a lack of research.

 

Thank you for your reply @PhysiosforME .

And apologies for my unbalanced comment. I appreciate your work and the impact of it. My congratulations to your anniversary should have preceded my hint to my concerns about the details on which publisher will sell your book.

I just was really shocked when I had a look at the publisher's website which seems to be a depository for the promotion of fashionable non-evidenced treatments and trendy life-style myths.

That's OK as long as people don't conflate it with science. If it's sold as science though, that's exactly the sort of claims we need to debunk and push back when people try to impose them on the understanding of illnesses, in particular contested illnesses, and chronically ill people.

It's good that you have control on content but I'm afraid my concerns sill apply.

Now that there is more awareness for ME due to post covid syndromes these illnesses seem to present an emerging market for all kind of health care / wellness business people and if there is a chance to appear more science-based they will use it.

Also, I'd like to reiterate what others said regarding assumptions about the pathophysiology of ME.

See most recent forum discussion here:

Over which physiological abnormalities in ME/CFS is there a scientific consensus about? | Science for ME

https://www.s4me.info/threads/over-...scientific-consensus-about.20900/#post-349883

You might find Snow Leopard's comment on the 2 days CPET test particularly interesting.

https://www.s4me.info/threads/over-...scientific-consensus-about.20900/#post-350001

I'm sorry that I can't hide my concerns about these parts of the news.

Having said that, thanks for your important work and for engaging with us S4ME folks.

 

Agreed, honesty has to be the best policy. Anything else would be a slippery slope.

Edit: Realise that could be misconstrued as a slur on your good selves @PhysiosforME, which I assure you it is not. Hugely impressed with the work you do.

 

I echo the comments above. I’m not sure there is anything we know about the pathophysiology and its relevance to a physiotherapist’s clinical practice that couldn’t be written on one side of A4.

Having said that, if the book is mostly about our lack of knowledge, the reasons for that, and what we know physios should not be doing and why, then it could be helpful and I wish you good luck with it.

But please be careful not to undermine valid arguments and criticism of BPS research by overstating what is known or what physios can do to help.

[Edit to add: thanks for all the positive work you’ve done, and for your involvement on S4ME.]

 

The 2 day CPET studies - at least the ones m familiar with including two I was in as a control - also record symptoms at baseline, during the tests and in the days. So wouldn't that be sufficient to tell us something about PEM - at least PEM caused by physical exertion? Also, if I remember, a study looked at how the post-exertion symptom profiles changed over time.

 

I don't think it actually fits together.

People feel they are in PEM after exertion at rest. They feel too ill to want to do anything. In a way a can't see how you can subject someone in that state to a second CPET at all. PEM is not just not be able quite to score as high on an exercise bike as yesterday.

It may be that the secondary CPET results indicate some shift in physiology that is indirectly related to the reason why people get PEM but they are often treated as a demonstration of PEM itself which they are not. PEM is about feeling unwell and CPET gives us no clue as to a mechanism for feeling unwell. At 70my CPET results would probably be below many PWME but I don't feel unwell.

There is no doubt that the CPET results are intriguing and perhaps the only clue we have to a physiologic change. But what is that shifts on day 2 is quite subtle to explain, as Snow Leopard has pointed out many times, and we seem tome no nearer any sort of theory that would fit with otherwise pretty normal biochemical data.

 

This might seem pedantic, but I think it is important to emphasise that this is not strictly true, at least for me.

PEM makes me feel more unwell, and feeling more unwell makes it harder to do many things and impossible to do others, but it doesn’t make me not want to do things. If anything my motivation increases the worse I’m feeling. From the outside it might look like lethargy because I am so inactive but internally it feels like the opposite.

In some ways it might be easier if feeling worse made me feel lethargic and unmotivated as there would not be the conflict between what I want to do and what I am able to do or what I am able to do without making me feel worse. And my perception is that this the nature of the illness itself, rather anything to do with my character.

Obviously, I am only describing my personal experience here. I don’t know to what extent this is common to others with ME/CFS.

Yes, absolutely.

 

I think the English language is just too slippery sometimes.

I agree with this.

And with this.

I never lose my motivation to want to get things done but often feel too ill to want to do all that involved in getting them done.

i want to have a shower but feel too ill get clean clothes out (albeit PJs), undressed, showered, dressed and all the little steps in between.

there is a subtle difference to my mind but I'm not sure I've got the language skills to explain it.

 

I think the GWAS study is a positive development - although I am bit frustrated that it's taken some time to get up and running. Also, there have been GWAS studies in other diseases for about 15 years*, so, as usual, there's been no prioritisation of ME/CFS. The GWAS study came about when MRC asked a question along the lines "what research is most promising"** - thanks to @Jonathan Edwards

There's also been some new technology which may give more insight into claims of autoimmunity in ME/CFS i.e. a new method of looking for autoantibodies***.

But yea we need funding for biomedical research and possibly some luck re new technologies.


*https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2758713/

**"When I acted as MRC advisor this recent time around the GWAS project was the one thing that looked worthwhile, apart from maybe some actimetry studies."
https://www.s4me.info/threads/georg...dian-article-21-1-21.18562/page-4#post-319043

**https://www.s4me.info/threads/reap-...eome-2021-wang-et-al.20747/page-2#post-348828

 

Where pathophysiology is concerned, the UK BPS psych school* initially adopted the grotesque position espoused by McEvedy & Beard(1970), that there was no pathophysiology in ME patients, only psychopathology. And then as the M & B nostrum became untenable in face of reasoned challenge, the UK BPS psych school settled on an equally unscientific handwavy notion that some unidentified pathophysiologic state was maintained by a similarly obscure psychopathological state.

The UK BPS psych school have relied on hypothesis stacking, on avoidance of prior plausibility testing, avoidance of falsifiability and avoidance of parsimony, on which basis it's very difficult to see what its members could possibly offer in useful evidence for the pathophysiology of ME/CFS.

*My personal take: The biosociolpsycho model of health can have validity when applied with due rigour, its misuse by a small group of UK psychs needs to be labelled as such and not confused with how other academics, other disciplines and other countries might apply it. "UK BPS psych school" is my attempt at focussing in on the miscreants rather than the model.

 

Indeed - GWAS is going to find out if there are identifiable genetic commonalities - or not ! It maybe that there will be a number of niche commonalities that offer different lines of investigation relevant to various sub groups of the ME/CFS population, and if we are very lucky some of those groups may large. But GWAS seems like it is only a first step on the road to defining the pathopysiology(gies) of ME/CFS.

 

A question @Jonathan Edwards:

When a normally healthy person goes down with a really nasty bout of flu, they feel pretty ghastly as we all know. Presumably there are physical biomarkers that can be measured correlating with this.

And yet when a pwME is in a similar or worse state, there are no biomarkers. Why is that? Or is that still one of the big unanswered questions?

 

I agree that CPET findings do not demonstrate/are not the same as PEM. I was just referring to the fact that they also record symptoms at baseline and at times post exertion 1 and exertion 2. So while my CPET results may be similar to or even worse than a person with ME, I had no symptoms at any time point whereas PWME presumably showed an increase. That should tell us something about the nature of PEM after at least physical exertion of that type.

 

Yup.

 

Most daily living activities are actually a whole series of steps when you break them down, and that's the problem. I usually know from experience when I can start but not complete an activity such as showering without making PEM worse; I also know that if I start, I probably will complete it because the alternative (getting into bed dripping wet and with conditioner still in my hair) is impractical.

And also, because I'm only moderately affected, if I push through that first 'wall' of clumsiness, shakiness, and rapidly weakening muscles, adrenaline will kick in and I'll feel better physically but lose all awareness of the situation. This inevitably means I'll end up deciding I might as well clean the loo and sink whilst I'm in the bathroom (or something equally stupid), shortly before keeling over completely. Instead of worse PEM – massively worse PEM.

There's no wonder we don't have adequate language for it!

 

This, for me, is the killer. Even as a more severe pwME.

Sometimes I just can't push through I feel too ill, will fall over or whatever and that's that.

Sometimes, I can just manage to do something small. If I do trigger that adrenaline storm, I feel much better than usual for a very brief window in time. Like the eye of the storm, once you pass through that point, you're in a world of hurt. All the worse for being self inflicted.

It's so tempting, when you suddenly feel like you could do something, to just get it done.

I wouldn't want to be depressed but I really could do with being less motivated. I think a lot of us are like that.