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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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ME/CFS Doctors and Specialists

ruben

Senior Member
Messages
295
I live in Suffolk, East Anglia. So not far from London. I would very much like to see a Doctor regarding my ME/CFS. Does anyone have any suggestions pleeeeeease. Thanks in advance.
 

Wishful

Senior Member
Messages
5,738
Location
Alberta
What are you expecting from a doctor? There's no diagnostic test, and no reliable treatments. There's also no basis for prescribing treatments for a given individual, since what might work for one might make another's ME worse. Given the stress and expense (even if your medical bills are covered), it may be a poor gamble, since the likelihood of help, even from a self-described "ME expert", is low. (Very low?)

We're all still waiting for the medical system to come up with any sort of help for ME.
 

Blazer95

..and we built castles in the Sky.
Messages
171
Location
Germany
This May Sound ground breaking and delusional but I would expect Support and Care from a doctor.

When did we normalize that a doctor dismissing someone with ME and giving 0 Treatment is in any way Acceptable? Of course we have 0 guidelines but why would a doctor be such a big Ass Pussy and try nothing and Bring 0 effort into His patients

Sorry. I get Mad at medicals quite fast because they dont even do the bare Minimum.


I am thankful to have a Interested and Caring GP but oh Boy let me Tell you it was Trial and Error until i Met him. Changed doctors Like 10 Times.

@threatstarter: i would try and Look Out for a Primary/GP that actually listens. And try to build a Team with him. We have Close to 0 ME experts in Europe. Greetings from Germany man.
 

Wishful

Senior Member
Messages
5,738
Location
Alberta
This May Sound ground breaking and delusional but I would expect Support and Care from a doctor.
That's what I had expected too, being healthy before my ME and not needing a doctor before. I was really quite shocked at the lack of care/concern shown by most of the doctors. I eventually just gave up on trying to get help for ME from doctors.

I recently went in for an old foot injury that hasn't healed, and a minor but persistent cough from a flu. The flu got prednisone--which on reflection seems like a bad choice if the cause is a microbial infection. It didn't help.
The other option for the cough was codeine, which seems like a treatment for the symptoms, rather than a treatment for the cause (possible infection?). I expected some sort of inhaled antibiotics, but a quick check (once I found the proper term to search for) shows that they've been tried and found not effective.

For my foot, I got an x-ray, which didn't show any cracks or chips. What I expected, was some sort of follow-up, since a negative x-ray doesn't solve the problem of pain. I think my doctor should have followed up with a recommendation for a scan for soft-tissue damage ... but he didn't. I'll have to go back to ask for that.

So, overall, not impressed with my doctor's handling of my problems. Are there better doctors? If so, what percentage of the total number of doctors? I'm a lot more optimistic about the potential of AI physicians.
 

ruben

Senior Member
Messages
295
That's what I had expected too, being healthy before my ME and not needing a doctor before. I was really quite shocked at the lack of care/concern shown by most of the doctors. I eventually just gave up on trying to get help for ME from doctors.

I recently went in for an old foot injury that hasn't healed, and a minor but persistent cough from a flu. The flu got prednisone--which on reflection seems like a bad choice if the cause is a microbial infection. It didn't help.
The other option for the cough was codeine, which seems like a treatment for the symptoms, rather than a treatment for the cause (possible infection?). I expected some sort of inhaled antibiotics, but a quick check (once I found the proper term to search for) shows that they've been tried and found not effective.

For my foot, I got an x-ray, which didn't show any cracks or chips. What I expected, was some sort of follow-up, since a negative x-ray doesn't solve the problem of pain. I think my doctor should have followed up with a recommendation for a scan for soft-tissue damage ... but he didn't. I'll have to go back to ask for that.

So, overall, not impressed with my doctor's handling of my problems. Are there better doctors? If so, what percentage of the total number of doctors? I'm a lot more optimistic about the potential of
With regard to coughs, I had a persistent one for months. Was cured literally overnight by vitamin D. Was like a miracle.
 

ruben

Senior Member
Messages
295
Hope it works like it did for me. My doctor gave me an inhaler. Was useless.
 

lenora

Senior Member
Messages
4,926
I agree with @ Blazer95. I've been the victim of multiple diagnoses for years now. One right after the other.

OK, my fine and caring neurologist died 4 mos. ago. I still miss him, but I did find a replacement. Not great the first visit, but on my second we established a cordial relationship. Most doctors won't order expensive tests until a patient shows an extended need for one.

I just had my third visit with my cardiologist. The first two...rather blotto, although he carefully reviewed my chart and found it hard to put all of my problems together (how to treat them). Actually, he reviewed the chart before he came in for the appointment. This last visit, the 3rd was totally different. We were even joking around, he was telling me about his new baby and how much joy he gave him and actually brought up cutting down on the number of visits I had to attend. This man is going to be kind and good, he cares.

Other doctors I knew from the beginning would not be in the league of a good patient/doctor relationship. So I would suggest that if someone is half decent, give them three chances and then move on.

I don't expect a doctor to cure me, but I do expect respect and kindness and of course I give it in return. Besides, if my original neurologist hadn't been the man he was, I wouldn't have been in trials for experimental drugs (which helped with a lot of pain...not opiates), anxiety and other matters. I wasn't the only one he was kind to....he was like that with all of his patients. Caring, joking, a visit was almost a pleasure.

So good luck to everyone. You should ask for MRI's after you've been going awhile, but most will want them after the 2nd or 3rd visit. Believe it or not, new things are being discovered each day....I should know, I've lived with this for way over 35 years, probably closer to 40. Progress has been made and eventually you and your doctor will trust each other enough to have a relationship of patient/doctor. A true one. Yours, Lenora
 

Wishful

Senior Member
Messages
5,738
Location
Alberta
Was cured literally overnight by vitamin D.
No success for me. I tried VitD with and without folic acid, and with whatever other supplements I have on hand. No change in the cough. The problem with N=1 events is that you can't prove that the factor (VitD) was responsible. Your cough might have gone away that day even without the supplement.

Maybe one of these days my cough will stop, and I'll wonder what factor might have been involved (hearing the first swan of the season?).