Publications that show ME is biological

[Mij]

@Inara as a comparison, there are various types of M.S. There is remitting relapsing MS, secondary MS and also primary MS. This could possibly be the case for M.E.

I've had M.E for 27 years but don't feel it's progressive in my case based on my history. I have the relapsing/remitting type and feel if I don't do any stupid from now on I will remain stable.

 

[Snowdrop]

@Inara

I had a look but could not find the MS quote. It was from a tweet in response to someone and I think was posted in one of the PACE threads. @Lucibee might remember perhaps.

 

[Inara]

Thank you so much for looking @Snowdrop! Maybe someone/I will come across it again...

 

[Lucibee]

Does anybody have at hand the Michael Sharpe quote where he says PACE was not supposed to focus on ME/CFS but on chronic fatigue (which has an F code if I remember correctly)?

It was this one:


And this one:


[I should just add that he does not explicitly say that PACE was not supposed to focus on ME/CFS - but we were trying to get him to explain what he meant by them being looked at separately for research purposes when they clearly combined them in PACE.]

 

[chrisb]

It must have been a different Michael Sharpe who wrote the paper defining CFS in such a way as to apparently include ME. Admittedly they did provide a post infectious category, but drew it so narrowly as to make it virtually meaningless.

Is he, like Reviewer 2, having pangs of guilt?

 

[Indigophoton]

Just in case anyone is planning to use these quotes for something, to be accurate, in the full thread of this part of the twitter conversation Sharpe clarified that, as far as he is concerned, the paper studied both CFS and a form of ME:

 

[Inara]

I also found this again: https://www.s4me.info/threads/micha...ohnthejack-on-twitter.3464/page-18#post-67701

Great, thank you all!

 

[Graham]

To be honest, I think a lot of the difficulties in this thread are caused by logical, careful thinkers trying to work out exactly what the psychs are saying, and I think you are on a hiding to nothing. When I look at the kind of fundamental errors that the psychs have made, and the inability to answer questions, I have major doubts whether they are able to perform that kind of precise analysis. I know they are highly qualified, and, some would claim, highly intelligent, but in the world of clarity of thought, I'm not sure that that is relevant.

I do not think they have a clear idea of what they are saying, and that it evolves over time, and changes according to the questioning.

I agree with @Woolie : those who have been supportive of the psychological interpretation of ME/CFS have been given more funds and have been working for many years to show evidence to support their case. So far, all of that evidence actually draws a blank. ME has to have some mechanism behind it, so the failure so far to show any psychological causation must swing the emphasis in favour of a physical element. That isn't a proof that it is a physical element, but it should certainly change the language of presumption.

 

[Sbag]

If patients clearly know beforehand that exercise is bad for them, why are there so many reports of patients trying GET and getting worse? I'm thinking about surveys here, not merely anecdotes. I think what's happening is that patients are willing to try GET and don't necessarily have strong opinions on it until it harms them.

In a certain sense that patients are willing to believe in GET makes the poor results of PACE more credible. It doesn't work even if patients believe in it.

I wonder if years ago patients did actually have any preconceived opinions about exercise. When I was diagnosed about 10 years ago I wasn't aware of any controversies etc so assumed what the drs were telling me regarding exercise was correct - thinking that i needed to get back to normal after an illness it seemed plausible. It's only after doing it and it making me worse that I started questioning it. Then in more recent years finding online communities and a source of knowledge and realising that others have the same problems.

So I think it is only in more recent years that people probably have any preconceived ideas about GET. I imagine that most people that have tried it previously actually did so in good faith.

As such the poor results from any GET based treatments are actually because it doesnt work and not because people have irrational illness beliefs.

 

[adambeyoncelowe]

I wonder if years ago patients did actually have any preconceived opinions about exercise. When I was diagnosed about 10 years ago I wasn't aware of any controversies etc so assumed what the drs were telling me regarding exercise was correct - thinking that i needed to get back to normal after an illness it seemed plausible. It's only after doing it and it making me worse that I started questioning it. Then in more recent years finding online communities and a source of knowledge and realising that others have the same problems.

So I think it is only in more recent years that people probably have any preconceived ideas about GET. I imagine that most people that have tried it previously actually did so in good faith.

As such the poor results from any GET based treatments are actually because it doesnt work and not because people have irrational illness beliefs.

I, too, started pushing myself a few years back because everywhere said GET was the answer. I'd had ME 15 years by that point without a proper diagnosis and just managed to deal with it. Then I pushed, and crashed, and it got worse. And it was only tiny amounts of exertion. The last three years, I've had to majorly readjust.

 

[Sbag]

It is very hard to know whether 2 day CPET tells us anything about a physiological basis for the cause of the illness or effects of the illness.

Again, gene expression studies may just show that, for instance, the white blood cells in PWME hang around longer and tend to be a bit old because of inactivity and lack of using up cells in response to minor injury. Older cells might respond differently to exercise.

What is needed is a physiological marker that HAS to be part of the cause. The easiest sort of marker is a genetic one (not gene expression) because it must be there before the disease so cannot be caused by the disease.

I was told by Dr William Weir that the 2 day CPET test proves that ME is an organic disease rather than psychological.

He said the response in the lower anaerobic threshold on the second day is only due to the body reacting differently to exericise, as a normal person (even if unfit) would have a higher threshold on the second day as the body responds to exercise.

This cannot be affected by thoughts etc as it measures a cellular response.

 

[Sbag]

I, too, started pushing myself a few years back because everywhere said GET was the answer. I'd had ME 15 years by that point without a proper diagnosis and just managed to deal with it. Then I pushed, and crashed, and it got worse. And it was only tiny amounts of exertion. The last three years, I've had to majorly readjust.

Do you remember if you had any negative views of GET before you started it? I bet back then you probably didn't so did it in good faith.

 

[adambeyoncelowe]

Do you remember if you had any negative views of GET before you started it? I bet back then you probably didn't so did it in good faith.

None whatsoever. I rather liked going for walks in the park. But the dizziness during and sheer flu-like exhaustion afterwards was what finally convinced me I had to stop. Then I did more research and realised it was contraindicated.

 

[Inara]

Dear @Graham, I need to admit that I don't understand entirely what your meaning is - I understand the part (and agree) that psych-people don't seem to use logic that much, which leads to inconsistent statements and theories, and that the psychs got all the money and, again, failed to prove their claims.
I have the feeling you wanted to say more with this and I don't get it.

Do you mean it is useless to apply logic in order to invalidate the psychs's claims?

 

[Graham]

All I mean is that I think the psych's approach is based on what they believe to be true, and like any belief can flex and adjust to circumstances. We can explain the lack of logic and consistency in what they say, but I don't think we will ever find a coherent and sensible basis behind their beliefs. It's more like a religion than a science: any effort to "disprove" that there is a God is ignored, because believers "know" it is true.

 

[Jonathan Edwards]

I was told by Dr William Weir that the 2 day CPET test proves that ME is an organic disease rather than psychological.

He said the response in the lower anaerobic threshold on the second day is only due to the body reacting differently to exericise, as a normal person (even if unfit) would have a higher threshold on the second day as the body responds to exercise.

This cannot be affected by thoughts etc as it measures a cellular response.

I disagree with Willy Weir on this. I think things a lot more complicated. Fearful thoughts can lead to major shifts in autonomic function that can change cellular behaviour significantly in the short term. In the longer terms various thoughts leading to patterns of behaviour can change all sorts of bodily functions. The fact that PWME seem to get different results from people thought to be 'deconditioned' is not enough to exclude a downstream effect of behavioural patterns on anaerobic threshold as aI see it.

 

[Inara]

All I mean is that I think the psych's approach is based on what they believe to be true, and like any belief can flex and adjust to circumstances. We can explain the lack of logic and consistency in what they say, but I don't think we will ever find a coherent and sensible basis behind their beliefs. It's more like a religion than a science: any effort to "disprove" that there is a God is ignored, because believers "know" it is true.

I agree @Graham. And now I understand. Thank you.

But officials, authorities, judges etc. don't see it that way. And I think about finding arguments, maybe even proofs, that what the psychs say is nonsense.

My experience was it is enough that a psychiatrist, for instance, says you have that psychiatric condition or that one; even more, it's enough a psychiatrist vocals a suspicion. Everyone will believe this (except some logic thinking species). And in order to invalidate these claims you have to disprove them by presenting proofs for your claim, that it's non-psychological. And even then they'll find "arguments" why what you say is false, without ever giving any proof for their claims. It is so unscientific - but that's the problems we face.

It's simply not enough that I say (or others here) that this method is unscientific, although I worked in science for some years or although others might perfectly kniw what's scientific and what isn't. It would probably be heard if someone like @Jonathan Edwards said this; it's about what other people accept as authority.

I was thinking about some very good arguments with which we can counter this (mal-)practice.

In court, for instance, it is not utterly important that all you say has a scientific basis (would be nice though). It's crucial that you say things that convince the judge.

 

[Indigophoton]

The fact that PWME seem to get different results from people thought to be 'deconditioned' is not enough to exclude a downstream effect of behavioural patterns on anaerobic threshold as aI see it.

This can only be true if ME is an umbrella term for several different illnesses, or if it is the etiology of one sub-group.

Considering PWME who were athletes/sportspeople/regular joggers before becoming ill, presumably their pre-illness capabilities preclude the possibility of unhelpful thoughts or behaviours adversely affecting their anaerobic threshold, since they could comfortably repeatedly exercise to a decent standard. If that's true for some PWME then it must be true for ME, unless there are distinct illnesses under the same banner, or unless cognitive/behavioural issues are one of several different, non-overlapping, pathways into the illness.

 

[Jonathan Edwards]

This can only be true if ME is an umbrella term for several different illnesses, or if it is the etiology of one sub-group.

Considering PWME who were athletes/sportspeople/regular joggers before becoming ill, presumably their pre-illness capabilities preclude the possibility of unhelpful thoughts or behaviours adversely affecting their anaerobic threshold, since they could comfortably repeatedly exercise to a decent standard. If that's true for some PWME then it must be true for ME, unless there are distinct illnesses under the same banner, or unless cognitive/behavioural issues are one of several different, non-overlapping, pathways into the illness.

I don't think it is as simple as that. Very fit people can develop unhelpful thoughts later on. My wife was a captain of a university swimming team in her youth. Later on she developed a psychotic illness with unhelpful thoughts such that she lost two stone and ended up on a drip feed. I am not suggesting that that is what happens in ME but I don't think the CPET results tell us what is going on. I personally think it very likely that the primary problem in ME is a signalling one in either immune or nervous system or both. Symptoms are downstream of that. The same signalling problem could affect CPET results I think, through various mechanisms - which makes the CPET result a downstream by-product. It may be real but it does discriminate ultimate causes.

 

[Indigophoton]

Very fit people can develop unhelpful thoughts later on.

Yes, although I was assuming sudden onset cases argue against that as far as initial cause goes, but I guess the CPET studies are not done until some time into a person's illness, so not discriminatory.

I personally think it very likely that the primary problem in ME is a signalling one in either immune or nervous system or both. Symptoms are downstream of that.

I hope it is something like this, because presumably there is then the possibility of correcting the signal. Do you think this is likely, in the kinds of things you're thinking of?