Is it too early to create a medical specialty for m.e.-like diseases?

i thought i would raise it as a possibility. very off the cuff.

assumptions:

1) some proportion of medical and biomedical specialties
are sometimes said to hate m.e. and other diseases.
government org charts (e.g. at nih) might or might not
have a similar characteristic.
2) this will vary by country and other factors, but some
will be good places to start.

the idea is to create a medical specialty for the set of
diseases m.e. falls into. the long covid alliance contains
some of the diseases. they tend to be multisystem, serious,
persecuted, and hard to diagnose.

this might include such things as dysautonomia, m.e., gulf
war, pesticide poisoning.

cons:

1) any one disease is just too unknown
2) at least one or two diseases do not fully have a handle
on criteria even
3) any one disease could be shuttled off as obviously a
different specialty (autoimmune, metabolic, genetic)
4) can't fully distinguish the set of diseases yet
5) don't know the biological connections if any
6) can't differentially diagnose well (imo this is a pro)
7) don't really know causation at any level yet (either
root cause or following lipkin's recent claim even a
common point that different root causes go to)
8) some who specialize in them informally are considered
flaky (imo this might be a pro)
9) might have to be careful not to let politics define
which diseases belong in the specialty

pros:

1) nobody really knows or cares where to put them in
existing specialties so creating a place would gather
up the diseases that annoy all of the others
2) those who take an interest in these diseases are
scattered among various specialties. gathering them
together would be a dream. they could work together
and be identifiable.
3) those who have the diseases could go there without
getting persecuted as much
4) those who have the disease could get differentially
diagnosed more skillfully
5) there is some degree of momentum with long covid,
favorable press (varies), expertise (ed yong, dt, brian
hughes) and the long covid alliance.
6) some scientists and physicians are overlapping some of
these diseases.
7) most specialties probably don't want us anyway unless
they can milk us
8) these diseases at present tend to require a look at the
whole elephant, such as taken by fluge and mella,
hanson, and davis. that is, you have to apply
knowledge and tools from many areas of biology. they
will be skilled.
9) they require lack of persecution and a kind of
willingness to look. we want that.
10) they might even say i don't know.
11) the latent level of interest out there might be high.
at first we will get those who are capable of seeing
the future or who are not motivated by ambition but by
solving a problem. there might be some who have
e.g. lc.
12) the current status of independent integrative or
functional medicine doctors is sometimes perceived to
be flaky and it might be possible to swamp the field
with good members such that that will not be the case.
these members would not go independent but might be
interested in joining and identifying with a specialty
if it is done right. over time and with knowledge
will come board certification and conferences and
other accoutrements.
13) eventually this collection of expertise and experts
will be able to stand up to organized misopathy and
will work together with an anti-misopathy
organization. there will be a name for it.
14) there will be a name for the specialty. everybody
will know where to look.
15) advocacy can further coalesce around this initially
loose collection.


colophon: this is an off the cuff post and maybe dumb at
least in places or a whole. i am not capable of doing
nything better atm and i am in a mood to try an idea for
stopping the persecution.

 

I think one of the problems is that whether it's a helpful way to do medicine or or not, a group of traditional specialisms does still exist. If nobody really knows what is wrong with a patient, it's hard for them to say which specialism should look after them. There's so little in the way of consistent underlying pathology in ME that it isn't even thought of as a disease at present.

Instead, we get BPS theories, or a load of waffle about multidisciplinary teams, or—possibly worst of all—an entire field of absolute cowboys who set out to exploit as many people as possible under the heading of 'functional medicine' or whatever they come up with next.

One of the challenges with a specialism in poorly-understood conditions might be that it's a bit chicken-and-egg. Getting anyone who commissions or runs clinical services interested is likely to encounter the familiar problem with lack of evidence: How do we know that these patients shouldn't be looked after by neurology, cardiology, rheumatology, haematology, or whatever? If the response is that limited understanding of aetiology is partly what defines the specialism, they then ask how diagnostic and treatment services could be run if the doctors don't know what they're treating.

Having said that, though, there are some good UK clinics specialising in some poorly understood conditions, I've been seen by a great team this year for lipoedema. Then again, it would be quite hard to deny that lipoedema exists as an entity, given the (often uncomfortably abundant) evidence!

It doesn't work in quite the same siloed way in research, thankfully. I wonder if the safest thing for all of us might be to let the researchers do their work first—because as you indicate, medicine is not benign. Nor is it easy to regulate tightly.

 

Not too early, far, far too late.

 

It could potentially be a branch of medicine, a general physician, who has done additional training in post-infectious conditions.

A general physician diagnosed my first post-infectious fatigue syndrome and then after having a further infection a year later causing the same symptoms, it then became obvious that I had ME.

They can easily communicate with other specialties like rheumatology, immunology, cardiology, infectious disease for additional support. They can order all the tests and perform them possibly to a higher standard than GP’s who are constrained by time. They could set up teams with physiotherapists, occupational therapists and nurse practitioners trained in ME too.

They would have to be trained in the history of ME/CFS and lack of evidence in BPS models (an absolute requirement) but understand that PwME are no more immune to getting psychiatric disorders as the general population as many are genetically inheritable but specifically understand the disability and problems we face and any anxiety or low mood is a secondary disturbance not a primary one.

Many physicians are used to dealing with chronic medical illness and take a longitudinal approach rather than assess and refer on.

In NZ this is primarily done by GP’s with a special interest in ME, few and far between unfortunately.

 

Creating a medical specialism is I think something of a boot strap operation. You create specialists posts of various sorts, which then train others and conduct research, which hopefully prompts other services to follow suit.

In the UK, in theory the creation of the specialist ME/CFS services should have been part of this process. However in general the UK services have not been doctor or consultant lead, and have failed to become progressive regional centres of excellence. This may because most specialist services were in practice set up to just implement CBT and GET component of the old NICE guideline rather than providing a comprehensive diagnosis and management service to people with ME. Perhaps the Bath specialist service is one of the few that could have contributed towards the develop a new medical specialism, but I guess most of us would see this as undesirable given their disappearance down the BPS rabbit hole.

Also the creation of dedicated professorial chairs in universities can help to kick start a new specialism. This should generate relevant teaching and attract research grants and studentships. I think, the current professors in the UK with special interest in ME/CFS have a personal interest rather than it being written into their job description. For example Prof Crawley in Bristol is listed as a Professor of Child Health. I don’t know if any successor to her would automatically be both Professor of Child Health in Bristol as well as head of the Bath specialist service.

One of my personal ‘if I won the lottery fantasies’ is endowing a chair in the biomedical aspects or physiological underpinnings of ME.

 

Is historically the problem not the lack of a specific ME medical specialism, as much that we do not fit easily within the existing structure of medical specialisms and no one existing specialism has taken ownership of us?

 

The problem would seem to be that post viral conditions were seen as anti society in the dawn of time I.e. that they led to non productive drones, worse than that as other productive drones needed to use resources to look after then.

Obviously not a tenable position, for anyone, but especially for those needing productive drones to increase profits.

Simplest just to remove sufferers of post viral conditions from society, using asylums, prisons, whatever was most expedient and cheapest.

So such things became seen as behavioural and mental health issues, and, as its gone on so long, still are by most.

Just my opinion.