Why are there so few PAIS doctors? [Blog post]

Siebe

Siebe

Established Member (Voting Rights)
I did a quick dive into the Dutch healthcare system to try and identify the barriers towards there being so few doctors for us.

Why are there so few ME/Long Covid doctors? - 'How to solve a disease?'

Summary
I identify the following reasons:
  1. No attention to PAIS in medical school curricula (each UMC sets its own)
  2. General doctor shortage, mainly from limited residency/specialty-training positions
  3. No dedicated training capacity - no fixed place with skilled supervisors plus enough patients
  4. No official place within existing medical specialties, and no specialty of its own
  5. No dedicated billing codes (DBCs), so doctors can only bill under generic "other conditions"
  6. No RCT-proven treatments, so nothing to build reimbursement or protocols around
  7. Many patients go undiagnosed, so there's no clear care pathway creating pressure for change
I came to the following plan (but see the problem at the end):

1. Doctors who treat PAIS, plus doctors who have PAIS themselves, lobby jointly for an official "area of focus" within an existing specialty (likely internal medicine or neurology)

2. From that foothold, push for new diagnosis-treatment billing codes through the Dutch Healthcare Authority's annual review, plus training and quality standards

The problem: the doctors who'd need to do this lobbying are scattered across specialties, while the lobbying itself has to happen within one specialty society - and there aren't currently many internists or neurologists (or any other specialists) motivated and positioned to drive it.
 
I like your plan @Siebe.

But, I think there are more problems, mostly stemming from the prejudice against PAIS-type conditions.

8. Many doctors and health systems don't believe the conditions are different to hysteria/conversion disorder/etc
9. Many doctors with PAIS-type conditions are ashamed to have it be known, and/or feel (often with good evidence) that if they 'came out' as having a PAIS condition, their career would suffer.
10. Caring for people with PAIS conditions is not a prestige specialty choice, quite the opposite in fact.

Siebe said:
identify the barriers towards there being so few doctors for us.
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Of course, there is also the issue of the quantity problem being different to the quality problem. 'More doctors' could easily end up being worse for us, if they are pushing an FND/psychosomatic agenda, or if they are biobabble believers, or if they are focussed on making money by selling bogus cures.
 
It has been explained to me from two specialists that there is a ‘treat and send them on their way’ attitude where we currently have no idea of a mechanism and looking after post infective syndrome patients is harder because there is no realistic treatment (although those two doctors also said the patients were more appreciative overall). I took that to mean someone with an inflammatory condition is much easier to help and then move on to the next patient. There are less and less doctors willing to do the harder grind when there is little on the table. Chronic pain conditions have ok treatments and there is roughly 2/10ths of the specialists left practicing in my region. I would say that ME/CFS has fared worse or the same. It is pretty depressing. So I think it is more number 4 and 6 from above.
 
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Everything to me seems linked to 1,3,4, 8 and 9. I don’t buy the no treatments line as there are plenty of conditions we can’t treat but still care for people. With me/cfs there is no health or social care.

I like the attempt to break it down into practical steps to address though.
 
I agree with the range of factors but I think they all stem from a consensus in the medical profession that not only is there nothing that can be done but nothing needs to be done.

Some groups of doctors have taken an interest but generally just made things worse - psychological medicine and now rehab.


I would steer away from the PAIS term. It puts the focus on resolving post viral fatigue and convalescence. It feeds straight in to a sports medicine rehab mindset which is the current bandwagon in the UK.
 
hotblack said:
I don’t buy the no treatments line as there are plenty of conditions we can’t treat but still care for people. With me/cfs there is no health or social care.
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But are there any conditions that are not in a medical or psychiatric manual? I don’t know. I have had pretty good care over the years so I can’t complain. The doctors that have exited the condition lately have all been the rehabilitationists and BPS people so maybe the same amount of good doctors available is the same as years ago which is far too few.
 
hotblack said:
I don’t buy the no treatments line as there are plenty of conditions we can’t treat but still care for people. With me/cfs there is no health or social care.
Click to expand...

I think MND (ALS) is a good example of a condition that for many years had no treatments that also for much of the twentieth century was also very poorly managed. At the start of my working life in the 1980s you still saw occasional patients, that possibly not even informed of their diagnosis so as not to upset them, being effectively sent home unsupported to die. However over the last fifty years considerable improvements have occurred in the support and management tools available, resulting in dramatic improvements in quality of life and reducing premature deaths.

Now, in part arising out of genetic research, there are emerging drug treatments that may slow or even reverse the impact of the disease.

I do think it is worth asking the question why was MND dealt with so much more pragmatically than ME/CFS or more widely PAIS?
 
Peter T said:
I think MND (ALS) is a good example of a condition that for many years had no treatments that also for much of the twentieth century was also very poorly managed.
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That’s a good point. And there are plenty of conditions throughout history where things have been poor. Which is I guess hope that they can be changed for us as they have for other conditions.

I suppose I just see a contrast at the moment with lots of people with conditions lobbing for better care. Who frankly all have a level of recognition that there is better care to be given way beyond what we see for me/cfs. And that’s what seems to stand out.

Jonathan Edwards said:
I agree with the range of factors but I think they all stem from a consensus in the medical profession that not only is there nothing that can be done but nothing needs to be done.
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Wholeheartedly agree.
There are also plenty who I think would help but just don’t know what to do. But that consensus and those who don’t think they need to gives a cover for nobody trying to do or change anything.
 
Jonathan Edwards said:
I think they all stem from a consensus in the medical profession that not only is there nothing that can be done but nothing needs to be done.
Click to expand...

I do not think that that's a consensus at all, though I do not dispute that many doctors will believe that nothing can be done at the moment. And even if it is a majority opinion, many will not be that invested in this opinion in contrast to the doctors who believe something really needs to happen. That motivated minority could have a lot of impact.
 
Peter T said:
why was MND dealt with so much more pragmatically than ME/CFS or more widely PAIS?
Click to expand...
ALS/MND was already classified as neurological based on clinical observation + post-mortem study in the late 19th century. I think that + a better understanding of the disease + probably pharma got incentives for rare diseases.

I think the more interesting comparisons are Celiac's, peptic ulcers, and narcolepsy. All were branded as psychosomatic until causes were found: gluten in the 40's-50s, h. pylori in the '80s, and orexin deficiency in the mid-'90s. Of those, 2 had clear institutional homes (gastroenterology) and even then it was a very uphill struggle for the H. Pylori camp.

Narcolepsy is a little more interesting and I want to dive into it further, because it could've been neurological or psychiatric, and then went with neurological because of the mechanistic evidence and ended up founding the interdisciplinary sub-specialty of sleep medicine. I think this points to the most likely path: we need clear scientific evidence putting ME into a specific specialty.
 
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Hutan said:
But, I think there are more problems, mostly stemming from the prejudice against PAIS-type conditions.

8. Many doctors and health systems don't believe the conditions are different to hysteria/conversion disorder/etc
9. Many doctors with PAIS-type conditions are ashamed to have it be known, and/or feel (often with good evidence) that if they 'came out' as having a PAIS condition, their career would suffer.
10. Caring for people with PAIS conditions is not a prestige specialty choice, quite the opposite in fact.
Click to expand...
All fair points. In this post I was focused on the more technocratic barriers because in my opinion "our disease is stigmatized" tends to be cited by patients as a complete explanation for everything that's bad with us. But it's not the only reason. It's only partial and it's not very actionable compared to other more technocratic reasons.
 
I think the psychosomatic history story can be overdone. I started out in medicine in the late 1960s. Neither peptic ulcer nor celiac nor narcolepsy were considered psychosomatic. One of our flatmates had narcolepsy so we got to know about it as students. The main causal factor recognized for ulcers was smoking, which was probably right. The pathology of celiac was well known. And you don't have steatorrhoea and growth failure from thinking wrong. Most medics were skeptical of the psychosomatic idea. And it was much the same for my father a generation earlier.
 
Jonathan Edwards said:
I think the psychosomatic history story can be overdone. I started out in medicine in the late 1960s. Neither peptic ulcer nor celiac nor narcolepsy were considered psychosomatic. One of our flatmates had narcolepsy so we got to know about it as students. The main causal factor recognized for ulcers was smoking, which was probably right. The pathology of celiac was well known. And you don't have steatorrhoea and growth failure from thinking wrong. Most medics were skeptical of the psychosomatic idea. And it was much the same for my father a generation earlier.
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Thanks for the pushback. I had Claude do a deep dive.

And here are the "holy seven" that were labeled psychosomatic (though I don't know how successfully):

Franz Alexander's "Holy Seven" — the classic psychosomatic diseases from his 1950 book Psychosomatic Medicine:
Peptic ulcer
Ulcerative colitis
Bronchial asthma
Neurodermatitis (atopic eczema)
Essential hypertension
Rheumatoid arthritis
Thyrotoxicosis (hyperthyroidism / Graves')
 
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I wonder if there are any truly psychosomatic conditions?

With in my own field as a Speech & Language Therapist there is what used to be called elective mutism, which was outside my specialism, but the little contact I had with such patients was that it was often not straight forward often with a somatic component.

I have recently read a little about pseudocyesis (phantom pregnancy), but I wonder which comes first the hormonal issues or the belief that you were pregnant.
 
The trouble with AI is that it will always pick up on the folklore, the stories. In the 1960s most doctors were very happy to be pragmatic and admit that we didn't know what caused much. Peptic ulcers were real, they bled and people died. Colleagues had them, who showed no sign of any psychiatric issues. Stress was thought maybe relevant but since you could not do much about it we ignored it.

I never once heard a colleague refer to ulcers as psychsomatic and we had endless lectures on them.
 
Alexander must have some sort of weirdo. None of those seven was considered psychosomatic by physicians in 1970. Stress was thought to play a role in PU symptoms and exacerbate childhood asthma, which it probably did.

I dont understand neurodermatitis/atopic eczema. To me those are two different conditions. Neurodermatitis is an uncommon type of OCD problem where there is obsessive scratching.

And I dont see any of that being what is now understood by psychsomatic, which is something to do with unconscious emotions revealing themselves as symptoms, without pathology.
 
Siebe said:
Franz Alexander's "Holy Seven" — the classic psychosomatic diseases from his 1950 book Psychosomatic Medicine:
Peptic ulcer
Ulcerative colitis
Bronchial asthma
Neurodermatitis (atopic eczema)
Essential hypertension
Rheumatoid arthritis
Thyrotoxicosis (hyperthyroidism / Graves')
Click to expand...
Is that really of that much relevance though? Does a look at the literature tell you everything?

I have doubts that heart failure, thyroid storm, popping eyes or the neck of the size of an rhinoceros would have been considered “all in the head” and treatment with antithyroid drugs has existed since the 1940’s with the same drug that is being used today having been introduced in 1950. Similarly I find it hard to imagine that swollen joints in RA would have been seen under a similar sense as ME/CFS has been seen in the past, even if there would have been various theories on how stress, childhood experiences or similar might be involved in various illnesses.

Concerning the problems for ME/CFS mentioned, what would be the best approach? I think it’s a valid question whether Netherlands, a fairly small country, might be a better spot if they could get a handful of smart people involved that do things properly rather than trying to turn a system on its head where nobody might know the end result of that process.
 
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