What medical specialty should look after ME/CFS?

[Jonathan Edwards]

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Don’t we need physician-led clinics with specialist nurses, integrated with collaborative research centres, which have inpatient, outpatient patient and home visit facilities for acute and long-term support? Would that not constitute a dedicated ME/CFS service?

No. That is what we already have for things like rheumatoid arthritis and multiple sclerosis and it is part and parcel of routine specialty clinics - rheumatology and neurology. If you want accurate diagnosis you want to see a physician who deals with all sorts of diagnoses. Nurses may be allocated to specialist management of specific conditions but as soon as you have off services you immediately get multidisciplinary garbage. I assure you, I have been precisely this happen for attempts to get 'ME services'.

It may be that the crucial step is to get suspected ME/CFS allocated to a speciality. That was discussed at the Government Working Party groups. Someone suggested allocating to rehab. I suggested that rheumatology was more appropriate.

 

[Sasha]

9 moved posts

It may be that the crucial step is to get suspected ME/CFS allocated to a speciality. That was discussed at the Government Working Party groups. Someone suggested allocating to rehab. I suggested that rheumatology was more appropriate.

Given that ME seems to have symptoms across all sorts of bodily systems, how could a suitable specialism be chosen? I just looked rheumatology up on the Internet to see why you might have chosen it but couldn't find a consistent description of it. Why do you think rheumatology would be the best one?

 

[Jonathan Edwards]

Given that ME seems to have symptoms across all sorts of bodily systems, how could a suitable specialism be chosen?

Rheumatologists have always dealt with multi system problems like lupus, rheumatoid disease (which affects pleura, lungs, liver, bones, blood), gout (with kidney failure). They deal with pain and problems with mobility. It is the obvious place.

 

[Dolphin]

Rheumatologists have always dealt with multi system problems like lupus, rheumatoid disease (which affects pleura, lungs, liver, bones, blood), gout (with kidney failure). They deal with pain and problems with mobility. It is the obvious place.

A practical problem currently is many rheumatologists currently seem to tend to see fibromyalgia and ME/CFS as two sides of the same coin and see patients through a fibromyalgia lens recommending exercise.

 

[Trish]

A practical problem currently is many rheumatologists currently seem to tend to see fibromyalgia and ME/CFS as two sides of the same coin and see patients through a fibromyalgia lens recommending exercise.

I think there's no better option than rheumatologists as things are at present. Neurologists will put us in FND and prescribe rehab, Rehab departments will prescribe rehab, psychiatrists will put us in psychosomatic and prescribe CBT... and so it goes.

 

[Sasha]

Rheumatologists have always dealt with multi system problems like lupus, rheumatoid disease (which affects pleura, lungs, liver, bones, blood), gout (with kidney failure). They deal with pain and problems with mobility. It is the obvious place.

What would you say is most rheumatologists' view of ME? Would they favour the BPS line, or understand that it's not psychological in origin? If a PwME wasn't in pain and didn't have immobility because of joint problems, would a rheumatologist be able to help?

(I hope I'm not pulling the thread off-topic, but if we want an NHS that's taking a useful approach, and that useful approach involves getting us into the right specialism, it's important to discuss what that would lead to.)

 

[V.R.T.]

My experience with a private rheumatologist was that he listened to my story of worsening through exercise, prescribed GET which i declined, did a bunch of tests and went on a charming monologue about how he saw lots of children with over protective parents and mobility aids they didn't need. He then reluctantly diagnosed me with CFS, went on another rant about how ME is a terrible name, and somehow managed to gaslight me into pushing at the edges of my diminishing energy envelope, saying i would likely get some of my functioning back if i did. He wished me good luck, i followed his advice and was bedbound 6 weeks later. Although i also caught covid so i can't blame him entirely.

If that is standard in rheumatology we have quite a task ahead of us.

What would you say is most rheumatologists' view of ME? Would they favour the BPS line, or understand that it's not psychological in origin? If a PwME wasn't in pain and didn't have immobility because of joint problems, would a rheumatologist be able to help?

(I hope I'm not pulling the thread off-topic, but if we want an NHS that's taking a useful approach, and that useful approach involves getting us into the right specialism, it's important to discuss what that would lead to.)

 

[Sasha]

If that is standard in rheumatology we have quite a task ahead of us.

I also had a weird conversation about ME with a rheumatologist that I'd been to see about something else (he favoured the central sensitisation theory) but he was very excited to hear that @Jonathan Edwards was involved in the field and that a rituximab trial was going on. Hard to judge from our N of 2 but I'm hopeful that most doctors who are given a sensible education about ME from senior figures that they trust might be useful - if there's any use that any specialist doctor can be, which I'm not certain of at present.

 

[Jonathan Edwards]

A practical problem currently is many rheumatologists currently seem to tend to see fibromyalgia and ME/CFS as two sides of the same coin and see patients through a fibromyalgia lens recommending exercise.

I think that problem is the same for all branches of medicine and for governments too - all obsessed with exercise. As Trish says, all one can do is suggest the most relevant specialty.

 

[Dolphin]

A practical problem currently is many rheumatologists currently seem to tend to see fibromyalgia and ME/CFS as two sides of the same coin and see patients through a fibromyalgia lens recommending exercise.

Just to add: in some cases I know of they re-diagnosed people as having fibromyalgia.

 

[hotblack]

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I want good research to find treatments and until then that to ensure day to day care for other issues and any emergencies is delivered in a way that is understanding of and doesn’t make my ME worse. I’m terrified of ending up in hospital after previous experiences.

This is what I’ve been asking for locally but it seems impossible within the current system in which we end up like a lost ping pong ball with nobody taking responsibility. Occasionally offered some advice on pacing or someone to talk to (so GET/CBT) to show they’re doing something if we kick up a fuss.

Regarding specialisms, no matter where we end up until there is proper education for all medical professionals on all of the ranges of ME we will face problems. It’s not the specialism that’s the problem but the ignorance and misinformation. We probably need an acceptance from all that until research bears fruit we can’t do anything other than ‘don’t make things worse’ for now. Well intentioned actions can cause harm.

p.s welcome to the forum @Karen Hargrave

 

[rvallee]

Moved posts

Given that ME seems to have symptoms across all sorts of bodily systems, how could a suitable specialism be chosen? I just looked rheumatology up on the Internet to see why you might have chosen it but couldn't find a consistent description of it. Why do you think rheumatology would be the best one?

It needs its own specialty. Which is unlikely to happen any time soon. So any alternative model will be temporary and less effective, a compromise that makes all outcomes worse. The only question is how much worse. Although rheumatology does seem to be the least worse option.

Most likely this only happens once medical AIs get at the level where they are superior to most doctors and simply take over, making this whole controversy obsolete by technology. At this point it basically doesn't matter which specialty, because it will be all of them. I don't know which will happen: near-AGI level medical systems, or a medical specialty created to deal with a broad range of issues that medicine simply refuses to acknowledge even exists and has for decades thrown into the heap of psychosomatic ideology. I'm going to go with AI here, just because I have full confidence in medicine's infinite ability to fail miserably. They have so much experience at it and aren't open to reason or interested in facts.

As for services, I don't think they matter much unless they tie in fully with a coherent and comprehensive, international, research effort. We've seen the dynamic with LC: clinics open, they take patients, don't know what to do with patients, discharge patients without helping them but convinced they did. This is useless. This is a research problem and any clinic needs to be 100% dedicated to it and nothing else, shouldn't even bother with treatments since there aren't any.

 

[Amw66]

I think there's no better option than rheumatologists as things are at present. Neurologists will put us in FND and prescribe rehab, Rehab departments will prescribe rehab, psychiatrists will put us in psychosomatic and prescribe CBT... and so it goes.

One brief consult with rheumatology suggested joing a gym.
My daughter rested for 2 days to make the appointment

 

[MrMagoo]

My last clinic was part of Infectious Diseases. I know the main “non-ME” people who I’ve met that really get the fatigue have HIV, especially before they got diagnosed or the right meds.

 

[Nightsong]

I suppose the possibilities would be infectious diseases, rheumatology, immunology or neurology. I'd be opposed to neurology. Rheumatology seems a fairly reasonable choice; yes, a few patients may end up being misdiagnosed with fibromyalgia (or EDS-III) so they can be shunted off more easily to the therapists without the benefit of such supportive elements as they are supposed to get with an ME diagnosis.

Would BSR be opposed? I checked the comments on the NICE draft to see if they had commented & couldn't find anything although there were mixed, mostly critical comments from a "Primary Care Rheumatology and MSK Medicine Society" which I had never heard of.

ETA: BSR produced this briefing on fibromyalgia in 2017 and in 2022 supported RCP's fibromyalgia guideline.

 

[Jonathan Edwards]

Would BSR be opposed?

I have no idea. It's an interesting question. A number of rheumatologists have got interested in research into fatigue associated with systemic disease. The Government Working Party om ME/CFS appointed a rheumatologist as chair, which is perhaps a significant sign.

The BSR has been the home of muddled thinking about hypermobility and EDS and I had no joy trying to persuade them to stand up against claims of cervical spine surgery being useful to to treat fatigue, as did a paediatrician. On the other hand at least there has been interest in long term disablng symptoms. ME/CFS under the paediatricians at UCH merges into the adolescent service run by rheumatology. There is certainly a precedent there.

One brief consult with rheumatology suggested joing a gym.

So yes, we recognise that rheumatologists have been as misguided about ME/CFS as any but at least, unlike psychiatry, GP and RCP, the BSR didn't get involved in the objection to NICE 2021.

 

[Jonathan Edwards]

I agree that infectious disease is probably the other major possibility and has historically assessed ME/CFS patients. The downside is that ID physicians tend to expect to see people short term and discharge once treated. Rheumatologists are used to long term care. Interestingly, modern rheumatology arose from physicians dealing with rheumatic fever (a post-infectious illness) moving into the new discipline of immunology.

 

[hotblack]

The downside is that ID physicians tend to expect to see people short term and discharge once treated. Rheumatologists are used to long term care.

This was exactly my experience. A good bunch who were keen to try to find out what was wrong, especially given my history and how my ME started. But it was short term and when all their tests for exciting tropical diseases turned up negative I was discharged and became as many do, stuck in a homeless referral purgatory.

 

[EzzieD]

This was exactly my experience. A good bunch who were keen to try to find out what was wrong, especially given my history and how my ME started. But it was short term and when all their tests for exciting tropical diseases turned up negative I was discharged and became as many do, stuck in a homeless referral purgatory.

Yes, exactly my experience too. Was seen by an Infectious Diseases consultant who I really thought was going to be able to get to the bottom of whatever I was infected with and treat it, and they seemed interested/keen at first, only to cut me loose as soon as my routine blood test came back normal. Which was pretty pointless as I had already had routine blood tests through my GP which also had come back normal. I'd really hoped ID would be more knowledgeable about viral illnesses and more thorough in their approach than just yet another routine blood test. Like you, I was simply left to it in purgatory (well, more like Hell than purgatory).

 

[Peter T]

I agree that infectious disease is probably the other major possibility and has historically assessed ME/CFS patients. The downside is that ID physicians tend to expect to see people short term and discharge once treated. Rheumatologists are used to long term care. Interestingly, modern rheumatology arose from physicians dealing with rheumatic fever (a post-infectious illness) moving into the new discipline of immunology.

I don’t know if it is still the case, but in Sheffield consultant referrals for ME/CFS were sent to ID. However when I was seen by them some thirty years ago and some 15 years ago they just diagnosed and handed me back to the GP without any specific recommendations.