News from Doctors with ME

[Jonathan Edwards]

That seems to me to be a good article. It's good to see DwME producing some good resources.

It is OK as a take home message for lay people but it commits so many of the mistakes the psychiatrists make and it plays into the MUS narrative through having a complete lack of supportive evidence.

 

[Jonathan Edwards]

And really this sort of account is not alright for lay people. ME is not a nultisystem disease in any meaningful sense of the word and calling it that is likely to generate misunderstandings in patients and carers that may do significant harm. I find myself very much in the middle here. I think this sort of stuff can do just as much harm as the BPS stuff.

 

[Trish]

Can you explain more about what you think such an article should include?

They cover the NICE advice on diagnosis and activity management, and some evidence that ME is not caused by deconditioning, and is not psychosomatic. It seems to me to be pretty much what NICE has said.

 

[Nightsong]

"multisystem disease"

Same with "complex". Peptic ulcer being caused by a pathogen seems simple enough in retrospect but was not at the time; perhaps in a decade ME will be considered a disease with a straightforward pathophysiology. The fact that we don't currently understand it doesn't make it complex.

In a document for professionals it would have been best to avoid dogmatic assertions of what ME is or is not. Most psychiatrists will have been educated in the cognitive-behavioural hypothesis and it would have been more useful to explain why interventions based on that hypothesis have either given null results, effectively null results or have been too methodologically flawed to interpret. Also, the 2-day CPET results are interesting but emphatically do not prove "their inability to generate energy to power activity". In fact I strongly suspect "energy generation", as in some forms of mitochondrial disease, is not at all related to the symptoms we experience after exertion.

I hadn't seen the linked presentation on differentiating ME/CFS from depression & anxiety before. This would actually be more useful to the average psychiatrist than the DwME document; if it were updated - DSM-IV is now outdated - and generalised to be less America-centric, I think that would be a useful resource to point psychiatrists towards.

 

[Trish]

I like it when people disagree with me. It makes me look at things more closely.

I saw the article from the perspective of which bits of the NICE guideline are relevant for psychiatrists. I agree they overstep on the biomedical bits. Perhaps my expectations are so low that anything that tells psychs the Wessely followers are wrong has to be an improvement. I read it with the perspective as myself as a patient if I ever have to see a psychiatrist I'd want them to have the gist of what they should and should not do that is introduced in this article.

The complex multisystem terminology is in the NICE guideline too.

ME/CFS is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated

page 9 of the guideline.

 

[Jonathan Edwards]

Can you explain more about what you think such an article should include?

It should justify the statements made.

The NICE advice on diagnosis is just a rough and ready approximation to what is really needed - an understanding of why a label is being used. Rather than say that ME is a disease and PEM is the most important symptom I would say something more like. 'ME/CFS is thought to be a useful term for identifying a subgroup of people with long term disability with intolerance of exertion typically experienced as post-exertional malaise. PEM is commonly associated with intolerance of other sensory stimuli, unrefreshing sleep...

In a sense it not so much that PEM is a key feature of ME/CFS but ME/CFS is the way we pick out a PEM-type illness. The NICE guidelines are for people with PEM (in simple terms) so criticism of the guidelines on the grounds that PEM is not a diagnostic feature is just missing the point.

The activity management may be right but there is no more evidence for rest and pacing than there is for GET. The piece should say that no reliable evidence is available for any management approach from trials but patient experience is that rest and pacing are most useful for coping.

DwME can say ME is not psychosomatic until they are blue in the face but without anything to support it the psychiatrists will simply go on thinking this is the patients' preoccupation with what they want to believe.

The complex multisystem terminology is in the NICE guideline too.

Yes, and it has no business there.

anything that tells psychs the Wessely followers are wrong has to be an improvement.

But if it makes the advocacy community wide open to the scoffing of Wessely and co so that they can now point fingers and say 'I told you so, these are hypocrites who have no more evidence than we do' is no way an improvement. It is the way to let the Royal Colleges win next time around.

I understand the good intentions but the naivety seems to me likely to do a lot of harm. I am very ready to try to help to make this stuff look convincing, but if I am not wanted I am not going to push the point.

 

[Jonathan Edwards]

DwME clearly want to speak with authority. They need to if they are to be taken seriously. But simple things like the credits for this psychiatry piece make the process look amateur:

Psychiatry and Psychology Working Group
Dr Crowder BSc (hons) MB ChB FRANZCP, Associate, DwME
Yochai Re’em, M.D., Associate, DwME

A professional body would not use format. It would something like:

Psychiatry and Psychology Working Group
Racheal Crowder MB ChB FRANZCP,
Yochai Re’em, MD

Dr Crowder is what the patients call her, not what goes on a manuscript.
Being an associate of DwME means nothing - why aren't they members?
As far as I can see the authors are a rural psychiatrist in Australia and a private psychotherapist in New York. Maybe they have some special expertise to offer but it isn't evident from the piece.

 

[Hoopoe]

I think multisystem is meant to say that patients can have many seemingly unconnected symptoms. It can't be a reference to a precise disease mechanisms because it hasn't been found yet.

DwME isn't perfect but so much other material is much worse in comparison.

 

[Jonathan Edwards]

I think multisystem is meant to say that patients can have many seemingly unconnected symptoms. It can't be a reference to a precise disease mechanisms because it hasn't been found yet.

It very specifically means, in medical terms, that pathology occurs in multiple systems. Talk of systems is talk of mechanism and as you say, no mechanism is known. It very definitely is not meant to mean lots of different symptoms, it wants to claim more.

The use of the term is designed to claim that it is known that there is a widespread pathology and that is not going to convince anyone because it isn't known.

I think North American organisations started this hare and it can only harm the advocacy process.
You cannot beat bullshit with bullshit.

 

[Ariel]

Unfortunately advocates often use words like "multi-system" and "complex" to mean, basically, bad/serious/highly disabling - and that's not what the words mean in a medical context.

 

[Hoopoe]

I still struggle to explain what the illness actually feels like in my body and how it affects me. In part because there are no commonly used words that I know of to describe these sensations. In part because symptoms fluctuate over the course of a year and in response to activities so a bigger picture perspective is needed. The illness is complex.

This is maybe the reason there is so much imprecise language, metaphors and what seems like exaggeration. What people are trying to express is that the illness is quite bad or worse.

 

[Hoopoe]

I wrote this because I have a medical appointment tomorrow and have anxiety over being unable to accurately describe what is wrong and then being misclassified as not seriously ill. I made some tea and felt terrible while doing it but couldn't really put in words what exactly is wrong. A lot of it seems to be due to poor blood flow to the brain that is affected by certain movements and it's hard to describe what the feels like. Activities become painful and unpleasant due to this. It's a mix of dizzy, weak, intensely unwell, with sense of balance also being off for a second or two in certain moments. But it's also not really nausea of the kind that would make one vomit. And the weakness is one where muscle strength seems to be quit normal, so that's easy to misinterpret as the patient falsely believing they have a muscle problem when the patient is just trying to say that there is some sensation that is best described as weakness .

 

[rvallee]

I don't know how it's commonly used but "multi-system" seems to mostly mean "crosses disciplines", but mostly in terms of the usual specialty silos. Obviously most diseases involve multiple systems since they always involve the immune system in some form. In that regard MS is multi-system as well, although homed in neurology, it's mostly an immune disease.

Which seems fine, unless it's used in bad faith, but this happens regardless, even with common words.

 

[Jonathan Edwards]

I wrote this because I have

Your post tells me as a doctor what I need to know - that this is a horrible illness nobody understands.

Unfortunately, the people who dreamt up this 'complex, multi system' business knew exactly what buttons to press to make it sound to lay people that they knew what they were talking about. But if you are writing a piece for medical professionals the con is transparent.

 

[Jonathan Edwards]

I don't know how it's commonly used but "multi-system" seems to mostly mean "crosses disciplines", but mostly in terms of the usual specialty silos. Obviously most diseases involve multiple systems since they always involve the immune system in some form. In that regard MS is multi-system as well, although homed in neurology, it's mostly an immune disease.

Which seems fine, unless it's used in bad faith, but this happens regardless, even with common words.

No, multi system means pathology in many systems. It has done since I trained fifty years ago. And its use in the context of ME was designed to imply that - without any reliable basis. It was designed to plug research programmes that had found results that never got replicated.

Quite a lot of disease involve multiple systems in terms of pathology but a lot don't. MS is confined to the central nervous system in terms of primary pathology. It doesn't even involve myelin in peripheral nerves - which is embarrassing for those who think it is a disease of autoimmunity to myelin. The fact that the origin is immune is irrelevant - it does not mean that it is multi system in pathological terms. The pathology is in the brain and cord.

We do not as yet have evidence for pathology in the immune system in ME so that isn't a justification. More specifically there is no immune pathology in tissues in ME that we can find.

The reality is that the description was used in bad faith by physicians wanting to build empires.

Exposing the emptiness of the BPS research programme has been a major success. I think the next major step is to expose the emptiness of the pseudo biomedical programme and get down to some real research. DecodeME does that. Fluge and Mella did that. Bullshit won't help.

 

[JemPD]

It makes me cringe when people all over the place make these claims for ME that are not substantiated, no matter how nice they might sound and how desperate we are to be taken seriously. The fact that DwME are doing it is just unbelievably unhelpful, despite my having huge respect for some of their members on an individual level. It is not just unhelpful but a hinderance if it can be used by the BPS bunch to beat us with.

One of the worst things (in general not ME specific) is when you hear people using medical words to sound like they have something bad. Like they say 'i have a migraine' when they have a headache because they think it sounds more impressive. I think this is what we look like to a lot of doctors who would be otherwise on the fence. As soon as we start insisting that there is 'inflammation in the brain and spinal cord' when there is no reliable evidence for that we discrdit ourselves. It makes me cringe.

Not saying DwME say 'inflammation in the brain' i'm just using it as an example i often see written 'for effect' on lay websites.

 

[JemPD]

I hadn't seen the linked presentation on differentiating ME/CFS from depression & anxiety before. This would actually be more useful to the average psychiatrist than the DwME document; if it were updated - DSM-IV is now outdated - and generalised to be less America-centric, I think that would be a useful resource to point psychiatrists towards.

I looked at that & i agree it could be helpful. But this.... (from the presentation)

Evaluate whether patient’s thinking is understandable in the circumstances or dysfunctional and resistant to change

my bolding.
this is at the heart of the problem with psychiatrists involvement with ME/CFS in the first place. They dont understand the circumtances, or have any kind of handle on them, usually, or believe they are as bad as we say they are, indeed its often impossible for anyone who doesnt both listen really intently, with an open mind and for a long period, or be able to see through being with the patient daily for a few months.... so they cannot possibly be qualified to assess whether anybody's thoughts are 'understandable in the circumstances'.

 

[Andy]

Project Florence Grant – Unified Digital Platform for Postviral Disease Professionals and Practitioners

Education, Collaboration and Policy Planning Initiative
Following a generous private grant of resources targeted specifically at Project Florence, we are proud to publicly announce the initiative, which is now moving into a test phase following pandemic driven delays.

Doctors with M.E. Registrants and Strategic Partners will benefit from a new digital platform that unifies education resources, course generation and corporate collaboration. Named after Florence Nightingale, the project will also deliver brainstorming, content creation and ‘war room’ planning capabilities for targeted policy and media outcomes. Organised around task-focused groups, the final platform will offer efficient coordination of projects, campaigns and joint ventures in a secured environment.

A requirement of the grant was maximisation of our professionals’ creativity and impact in a safe environment, building in freedom from the chance of external parties coming into possession of incomplete information (who may inadvertently undermine critical initiatives, unaware of contributors, workflow prioritisation or external relationships). Project Florence will also continue professional and externally qualified assessment of cybersecurity events and requirements.

https://doctorswith.me/project-flor...iral-disease-professionals-and-practitioners/

 

[Trish]

That sounds like they are setting up a private forum for their members. Which is fine. I'm sure all organisations need to have private work and discussion spaces. I'm not sure why it's wrapped up in so much paranoid sounding jargon about cybersecurity.

 

[InitialConditions]

That sounds like they are setting up a private forum for their members. Which is fine. I'm sure all organisations need to have private work and discussion spaces. I'm not sure why it's wrapped up in so much paranoid sounding jargon about cybersecurity.

Someone is continuing to conflate their role in DwME with their personal interests and professional/corporate experience in unrelated sectors.