Just wondering, if e.g. you move to a new area and need to change your GP/surgery, how would you go about finding one who might be understanding about ME/avoiding those who are not? I mean, local support groups are few and far between, it would be incredibly hit-and-miss to start a "Looking for a GP in [town]" thread here, not to mention that privacy issues might mean you didn't want to post your location, but the subject is too "niche" to post on something like Nextdoor ...
You can email surgery’s asking if they have any GPs that acknowledge ME/CFS as a physical disorder with reference to SNOMED CT.
I haven’t actually seen a gp for about 5 years since I retired and stopped needing to be signed off sick. I’ve never dealt with one that I felt had much if any knowledge of ME. I think it’s a lottery to be frank. I have taken the approach that I have signed up with the local surgery and will deal with any issues if they arise, asking for other Drs if not happy. I did have to change surgery in my previous town due to poor treatment by locums when getting diagnosed. I found that fairly straightforward so would definitely try that again if necessary.
My guess is that the important thing is to find a GP that listens. I don't think you can get that from emailing practices with queries. What my wife would do (she is much better at this than I) is to wander into a few shops which don't look very busy - maybe charity shops, independent chemists or independent clothing shops and ask promising-looking shopkeepers or assistants if they know a good GP who listens. Or get someone else to do it. If taking up new property is involved, estate agents are often well informed about local goings on so they might know too!
I wonder if this matters, depending on your age. A friend of mine in her late seventies has just moved to a new area and has registered with a new surgery. She is being assigned a particular GP within the practice who will be 'her' GP going forward. She said that this is what happens with older patients. It didn't happen to me when I joined my surgery twenty years ago. I, on the other hand, now find it a total crapshoot who I get at my surgery. I can wait weeks for an appointment with a doctor I choose, or days to get the first one available. I don't consider myself to have a particular GP but if I found one who was weird about ME, I'd just avoid them and choose another at the same surgery.
This is what worked for me and I was personally advised to do so by the Practice Manager. Further advice was never to see a doctor who thinks ME is a phycological condition as patient care will follow course. The manager couldn’t even guarantee that I would find a GP within the practice who accepts ME according to SNOMED but said if that was the case, it would be in my best interest to leave. I got ‘lucky’ and found GPs within the practice and I think it is due to this method of finding a GP that I receive a fair amount of secondary care referrals.
We've been with the same GP practice for nearly 40 years, though obviously all the doctors from back then are now retired. Right from the start we had a named GP but it never made any difference to who we saw. For emergency appointments you take pot luck who is available, for more planned appointments you can choose which doctor you see but you have to wait longer. About 10 years ago I wrote to the practice to say my daughter and I weren't able to get to the practice. After some correspondence they agreed we could have a home visit every 6 months from a GP of our choice to review our ME/CFS. In that correspondence they were also open about not knowing anything about ME and not seeing that they should since there is a clinic (run by OT's) they refer people to. They said they are generalists, and can't be expected to know all about specific diseases. I nominated a GP I'd never met simply because my daughter preferred a woman doctor. The GP I selected is very nice, and does home visits when really needed but only works part time and is clueless about ME, so I've abandoned the 6 monthly ME reviews. We now only use her for other things, not for ME. Most of our consultations now are by phone or in writing online via their system, especially since Covid. I've even sent photos when necessary by smartphone. Home visits only when really necessary. She has written letters to support our benefit applications saying basically what I asked her to say - confirming diagnosis and summarising what we can and can't do). My conclusion is that most GP's are clueless about ME, and I agree it's more important to have a GP who listens, takes other non ME symptoms seriously and is willing to do home visits if you're housebound, and has a sensible appointment system where you can at least get a phone appointment on the same day if needed.
My GP of 37 years retired 2 yrs ago. She was neutral regarding M.E, "they haven't figured out yet". I've had recurrent viral/vertigo for the last 2+ years so she set up an MRI appointment to r/o other possibilities. When I had a specific health issue she would set up and appointment to see a specialist. I hope my new GP is neutral as well.
If you're asking a medical centre for a doctor who accepts that ME is a real disease, it might help mentioning that you're not expecting treatment of ME, just someone who accepts that is a factor for dealing with other health issues. We may have abnormal responses to medications, and might have dietary restrictions, and can't "do an hour of exercise every day" or whatever. It also affects diagnostic questions, since we have ME-specific symptoms complicating things.
People often seem to direct this question to the ME Association. I think they even had a list of ME-friendly GPs at one point that members had recommended, although of course they didn't make it public, they just responded to queries about doctors in particular areas of the country. It might be worth finding out whether that's still active? If not, there are also local ME groups on Facebook. Not all are terribly active, but as everybody understands this particular issue, it's likely that you'd get some responses or pointers.
ask the MEA to ask anonymously on their fb page - seen it done and some good replies, not alwaya fruitful but i have seen it done. I have done the thing @Jonathan Edwards advises pre-ME, but in my experience health professionals who are excellent if you have anything else can turn very unpleasant if they come across an ME patient, so it's worth asking around. The MEa do have a list of local support groups, which is where i have asked previously but they werent forthcoming as the long term GPs who stick around have all retired. I picked my current one because she said the immortal words "you know your own body" to me about something else & spoke to me as if i was an intelliengt adult. I've yet to speak to her about anything ME related.
