lcmedata.org/ukdocs - webpage for Long COVID/ME clinics and doctors in the UK

[Liface]

A group of patients and I decided to make things more efficient for the community by creating the first-ever comprehensive listing for ME and Long COVID doctors and clinics in the UK.

http://lcmedata.org/ukdocs

We collated hundreds of comments from Reddit, Twitter, Facebook, forums, and group chats with only the most-rated doctors, pricing/visit info, and pros and cons from real patients.

25 doctors and clinics are listed, from NHS to private specialists, and pharmacies for LDN and ketotifen.

This is a living webpage and will be continually updated. Suggestions and updates welcome!

Note: the data was collected and organized by Highly Agentic LC/ME, a group of patients from tech and research backgrounds volunteering their time to give back to the community.

 

[Jonathan Edwards]

I would not recommend anyone consulting any of those listed to be honest. The fee for a single assessment is steep and I see no reason to think any of these people offer anything useful and many will offer misinformation and potentially harmful treatments.

 

[Nightsong]

I would not recommend anyone consulting any of those listed to be honest. The fee for a single assessment is steep and I see no reason to think any of these people offer anything useful and many will offer misinformation and potentially harmful treatments.

I would ordinarily agree with that but far too many pwME have problems for which some kind of "specialist" is required. They may need reports for social care or the DWP or their employer or an insurance agency from someone who actually understands how disabling ME/CFS is (even if they have weird mechanistic ideas and/or charge steep fees). They may be facing a sceptical local NHS GP; they may be in untreated pain. They may need surgery for an unrelated condition, and not be able to access the level of support they'd need to have it, and need someone to advocate for adaptations to be made. There are those who have feeding problems for whom the "care" available on the NHS is essentially "have you tried yoga?". Some of the people on the list have ideas that may paradoxically increase conflict with the NHS, but patients are left with nowhere else to turn. Given that there are no NHS specialists - what do patients do in those scenarios?

I really wish there were one or two sensible physicians with a genuine specialist interest in ME/CFS, but that came to an end after the 1990s/early 2000s with the establishment of the current network of psychobehavioural clinics. Changing this should be the among the first priorities of every charity & advocacy organisation, but all of them seem quite happy with ME/CFS being an illness managed by gaslighting therapists.

 

[InitialConditions]

Yes, there's very little they can offer and in my experience they end up focusing on stuff like pacing, diet, mind–body stuff, which is very expensive tinkering around the edges. This is the case even if the specialist paints themselves as purely in the 'biomedical camp'. You might get lucky with a prescribed med that helps reduce symptom burden.

But as @Nightsong says, there are legit reasons why pwME might need to see a specialist.

 

[Peter T]

I understand such a list is potentially problematic, however the UK MEA used to have a list of doctors with a special interest in ME/CFS. I don’t know how it was compiled.

I only used it once in 2000 when I needed a medical opinion to support of my ill health retirement. I saw consultant neurologist from the list who seemed to know his stuff. It made a big difference as my GP and the infectious diseases consultant, who had originally diagnosed my ME some years previously, declined to commit to any opinion on my long term prognosis.

 

[Jonathan Edwards]

Given that there are no NHS specialists - what do patients do in those scenarios?

The best bet i think would be to ask to be referred to a competent NHS physician who can check that the differential diagnosis has been covered. I can think of some competent physicians but will not name names. Beyond that I would take note of the NICE guideline and the FactSheets produced here and accept that pacing activities of daily living is all that we have reason to think is worthwhile.

I agree that it is difficult but in that list there are some physicians in their 80s who are sympathetic but cannot necessarily be relied on not to provide unhelpful folklore. Beyond that there are physcians and psychiatrists I would regard as potentially unsafe.

I resigned as director of Phoenix Rising* because I found it difficult to be in that role and to feel that the balance of recommendation and warning was reasonable on that forum. (There were tules that made it very difficult.) I may be erring on the side of caution but the older i get the more I think I should just be brutally honest. I have simple said that i would not recommend. Members then noow what I think.

* I do not have any such role here, of course.

 

[Jonathan Edwards]

I understand such a list is potentially problematic, however the UK MEA used to have a list of doctors with a special interest in ME/CFS. I don’t know how it was compiled.

Two thoughts. One is that things were different 25 years ago. There were quite a lot of competent physicians prepared to see ME/CFS cases. The other is that I hope we can do better here than the MEA does in terms of information.

 

[Felis Catus]

The best bet i think would be to ask to be referred to a competent NHS physician who can check that the differential diagnosis has been covered. I can think of some competent physicians but will not name names.

Genuine question: how can a patient ask for a referral that won't be refused for the sake of refusing?

I tried on multiple occasions and was never referred to any specialist, only given some (IMO lame) reasons why there was no need or no relevant specialist to see me. I've never tried to get a referral to a named specialist and I don't even know how to go about referrals outside my ICB. Honestly.

Both myself and people around me have had cases where our NHS GPs refused a referral but then private appointments revealed we should've been referred. Some are suffering with life long consequences. So I don't really have people in RL to give me examples which work and which I haven't already tried.

 

[Jonathan Edwards]

I tried on multiple occasions and was never referred to any specialist, only given some (IMO lame) reasons why there was no need or no relevant specialist to see me.

It is a fair question but the same applied to me for my prostate cancer and my knee arthritis. I had to set things up myself, which I was only able to do because my wife and I are physicians. The current situation in the UK is scary whatever is wrong with you.

 

[Felis Catus]

It is a fair question but the same applied to me for my prostate cancer and my knee arthritis. I had to set things up myself, which I was only able to do because my wife and I are physicians. The current situation in the UK is scary whatever is wrong with you.

Thank you for sharing. That's horrifying.

 

[NelliePledge]

if there’s a specialism dealing with what’s wrong with you at least you can track down doctors who you can get referred to

For ME/CFS the needles in the haystack on this list are pretty much all there is
If you put yourself in the hands of the NHS at best you will see a psychologist or physio not a dr
in my ICB there isn’t anything for ME/CFS at all. I don’t know how anyone would go about tracking down a competent NHS physician who would be willing to see someone for ME/CFS

 

[Jonathan Edwards]

if there’s a specialism dealing with what’s wrong with you at least you can track down doctors who you can get referred to

I agree there is a difference but there is also a difference in that there is no useful management for ME/CFS beyond following advice on fact sheets.

I don’t know how anyone would go about tracking down a competent NHS physician who would be willing to see someone for ME/CFS

For me it would be the same procedure I used for prostate cancer - getting advice from reliable colleagues about who was sensible and could handle the differential diagnosis issues. They need not be someone with 'an interest' in ME/CFS. The problem with those with an interest is that several recommend things that might well make people worse. The list includes someone who prescribes anticoagulants and a psychiatrist with a bee in their bonnet about EDS and mind-brain interaction.

 

[NelliePledge]

I agree there is a difference but there is also a difference in that there is no useful management for ME/CFS beyond following advice on fact sheets.


For me it would be the same procedure I used for prostate cancer - getting advice from reliable colleagues about who was sensible and could handle the differential diagnosis issues. They need not be someone with 'an interest' in ME/CFS. The problem with those with an interest is that several recommend things that might well make people worse. The list includes someone who prescribes anticoagulants and a psychiatrist with a bee in their bonnet about EDS and mind-brain interaction.

I understand the situation with “treatment”. But in the initial years anyone who has ME/CFS is likely to need some kind of medical report from an actual Dr to support them with employer, private insurance or benefits system. I didn’t realise I needed to seriously consider stopping trying to push myself to keep working until I heard this from one of those Drs who sees people privately. They wrote a report to my pension scheme when I put in to retire on health grounds. Without that Dr I would have had nothing to validate the situation I was in and certainly would have been dismissed on health grounds for inability to fulfill my 15 hours a week part time working contract. Anything from my GP would have been minimal and ill informed.

I had asked around locally and there was one guy in the city who people said had diagnosed them. When I looked him up online on his page at the private hospital it actually specifically said he didn’t take referrals for CFS…… I ended up going with someone who was seeing people in London. Luckily I could manage the train journey by breaking it up and staying with Home Counties relatives for four nights.

The ordinary patient just isn’t going to be able to go through the process and find someone competent like someone with medical connections can do through professional networking. If I need any further assistance from a Dr eg with blue badge application I will be contacting the AFME service.

 

[StellariaGraminea]

But in the initial years anyone who has ME/CFS is likely to need some kind of medical report from an actual Dr to support them with employer, private insurance or benefits system.

I'm in that situation, that's why websites like this are necessary. I need to have a "specialist" to access financial support, so am staying on the books of someone I really don't need to see now and am not impressed with. But I need paperwork done, that's the pragmatic reality.

 

[NelliePledge]

I'm in that situation, that's why websites like this are necessary. I need to have a "specialist" to access financial support, so am staying on the books of someone I really don't need to see now and am not impressed with. But I need paperwork done, that's the pragmatic reality.

Spot on. I only saw the private guy twice in 8 years the second time I had a conversation about starting weight loss jabs that I wanted to have with someone who actually had seen ME patients and could say if any of them had had problems apart from that I wasn’t impressed by what he came out with (had 6 years of S4ME to educate me).

 

[rvallee]

But in the initial years anyone who has ME/CFS is likely to need some kind of medical report from an actual Dr to support them with employer, private insurance or benefits system.

This is about 90% of what medicine can realistically do here, it's the only role they can play for the most part. It's a very critical one, it provides basic support in a time of need, and it's supposed to act as a measure of the scale of the problem. Somehow, though, it's perceived as a failure, as a final stage about which there is nothing they can do about, when it's rather supposed to act as the main motivation, the pressure to deliver results.

Right now we have something similar to someone with a giant gambling problem who is somehow able to hide their losses, by dumping them onto other people. It might be one of the extreme form of perverse incentives out there, it explicitly encourages not just failure on a case-by-case basis, but to make it perpetual, to cover it up by never recording accurately, and disable all the alarms and safeguards.

It's also technically supposed to be the basis of disability support. Medicine can't help everyone, and for those it can't, there is this last line of support. Except in reality that last line of support is only handed to a small fraction, so all the pressure to improve outcomes is lifted off. And it shows, everywhere, about all the things that relate to it: zero pressure.

Oddly enough it all stems from the misrepresentation of the problem. It's not failure to provide disability support to those who can't function, it's what a civilized society does. The real failure is the refusal to try, and ironically it only made the problem worse because had medicine actually tried, the costs to society would be far lower. Pressure as motivation is important. Removing all pressure removes all motivation. And wow does it show that there is zero motivation here, no ambition.

Everything they say about us is projection. God damn the irony.

 

[Jonathan Edwards]

I understand the situation with “treatment”. But in the initial years anyone who has ME/CFS is likely to need some kind of medical report from an actual Dr to support them with employer, private insurance or benefits system.

I appreciate that, but this list is not about that. There are one or two doctors of the sort you imply but the ones I know are in their eighties now. The others are recommended for providing unproven and potentially harmful treatments and pseudoscience folklore.

Already this week we have come across a company set up by an influencer and a retired medical academic that seems to want to sell misinformation. We previously had discussions about individuals making a living out of recommending surgery. I worry about motives with this sort of thing all the time.

If there is a list surely it should be presented in a better informed light?

 

[NelliePledge]

So maybe a checklist of what to look for as evidence a proposed treatment is effective and not harmful.

 

[Utsikt]

So maybe a checklist of what to look for as evidence a proposed treatment is effective and not harmful.

It would be:
1. there are no known effective treatments for ME/CFS yet
2. the risk of harm is in general greater than the chance of benefit

 

[Jonathan Edwards]

So maybe a checklist of what to look for as evidence a proposed treatment is effective and not harmful.

Readers are probably mostly not wanting to use up their energy looking for evidence. I think people putting up lists have the responsibility to do the quality control. A completely different sort of presentation would be more in the interests of people with ME/CFS or LC.

As I have said before "first do no harm' applies to everyone, not just doctors.