Enduring symptoms: A call to immediate action, 2025, Barnes

[Nightsong]

I have spent quite a bit of time trying to address this in the last month or so. Sadly, I have to say that I have had a fairly hostile reception from the people who speak loudest. I have, nevertheless, had significant support from some others who struggle to be heard.

Could you elaborate a little on the rationale the 'people who speak loudest' give for supporting more funding & resources for the psychobehavioural clinics?

To me the situation seems straightforward: if charities & advocates want these clinics to receive more funding & resources, then necessarily they must support what it is they are doing; if they support what the clinics are doing, then they must believe ME/CFS is amenable to psychobehavioural interventions (because overwhelmingly that is all the clinics offer); and, if they believe that, then it follows that they believe that ME/CFS is psychosomatic. Unless these (presumably) charity representatives / advocates are completely irrational I do not see another reasonable explanation for their behaviour.

Thanks so much for trying. We urgently need this to change.

 

[Trish]

I have spent quite a bit of time trying to address this in the last month or so. Sadly, I have to say that I have had a fairly hostile reception from the people who speak loudest. I have, nevertheless, had significant support from some others who struggle to be heard.

Are you referring here to clinicians or charity representatives?

 

[Jonathan Edwards]

Are you referring here to clinicians or charity representatives?

Charity representatives.

 

[Jonathan Edwards]

Could you elaborate a little on the rationale the 'people who speak loudest' give for supporting more funding & resources for the psychobehavioural clinics?

The main argument seems to be that community multidisciplinary teams are what are on offer and whatever is on offer should be received with thanks. When I suggested that it might mean that the chance of physician involvement, care for severe and very severe cases and any associated research might go out of the window as a result the argument was that one had to be realistic. I am not sure how accepting a team rehab approach to mild/moderate cases with no service for the severe or very severe (explicitly what is being negotiated) makes any sense.

Some clearly believe that multidisciplinary teams are a good thing, although I don't know why. My impressin is that they have swallowed the BACME 'dysregulation' approach which denies ME/CFS is psychobehavioural, while still taking a behavioural approach to 'therapy'.

 

[Utsikt]

When I suggested that it might mean that the chance of physician involvement, care for severe and very severe cases and any associated research might go out of the window as a result the argument was that one had to be realistic.

Realism or pragmatism seems to be the default defence for the associations, the same is seen in Norway.

I almost looks like an occupational injury for advocates - they end up focusing too much on what the people in power will accept and too little on what’s actually needed.

 

[V.R.T.]

So realism in this context is leaving us to the wolves? I quite literally despair.

 

[John Mac]

By David Tuller, DrPH

As part of its December issue, Future Healthcare Journal, sponsored by the UK’s Royal College of Physicians, has published a special section called “Challenging Myths: Debunking Functional Disorders.” The special section title itself creates confusion. In what way are functional disorders being “debunked”? I assume the idea is to debunk the purported “myths” about functional disorders, whatever they are—but that’s not what the words mean in this combination.

Moreover, the journal can’t seem to decide on the right label for the phenomenon it is exploring. While the special section title refers to “functional disorders,” the headline of the editorial introducing the project refers to “enduring symptoms”—a phrase I hadn’t seen used before in this context. (Has anyone else?) Mixing it up further, the editorial’s first sentence refers to “symptom-based disorders.” Are we all supposed to know whether these term are completely interchangeable?

Until like last week in the UK, the most popular collective label for this category of conditions of unknown etiology was “medically unexplained symptoms,” shorthanded to MUS. That name has now apparently fallen out of favor, like the earlier terms “psychosomatic” and “psychogenic”–which is actually what the recent and more neutral names still mean to a lot of medical professionals.

The lack of clarity in the terminology indicates how much the medical field still struggles to grapple with these complicated and difficult-to-treat syndromes and illnesses. Whatever the name, the category has generally included fibromyalgia, irritable bowel syndrome, functional neurological disorder, chronic fatigue and chronic fatigue syndrome, chronic pain, and any prolonged and disabling physical symptoms unexplained by known pathological mechanisms. Long COVID has now been lumped together with this group.

Trial By Error: Journal Publishes Confusing Section on "Enduring Symptoms" | Virology Blog

By David Tuller, DrPH As part of its December issue, Future Healthcare Journal, sponsored by the UK's Royal College of Physicians, has published a spec ...

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