• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

what's the general consensus on Dr Byron hyde

Aerose91

Senior Member
Messages
1,398
I contacted Dr Hyde office a while hack and they just recently wrote back to me. Obviously money is a big issue so before I go forward with an appointment with him I'm wondering where he stands among other ME/CFS doctors.
He seems to have a rather different view than most on the ideology of ME vs CFS and that's expressed through hfme.org. Is he worth pursuing? What outcome can come from seeing him?
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
The site hfme is written and maintained by a patient. I don't know whether she communicates with Dr. Hyde or not.

Dr. Hyde wrote The Little Red Book, which can be read as a pdf by searching. He also wrote one or more other books.
 

Sushi

Moderation Resource Albuquerque
Messages
19,933
Location
Albuquerque
@Aerose91

I don't think there is a general consensus on Dr. Byron Hyde. Patients seem to have strong opinions both positive and negative.
There are other threads discussing him. You might find them helpful.

Sushi
 

Aerose91

Senior Member
Messages
1,398
I guess it seems like he is the leading authority on the belief that ME and CFS are two different things. I wonder what other doctors think of his opinion.
 

helen1

Senior Member
Messages
1,033
Location
Canada
My experience with Dr Hyde, about six months ago, was that he had me tested for various other illnesses. He didn't do much else. I was disappointed.
 

Aerose91

Senior Member
Messages
1,398
My experience with Dr Hyde, about six months ago, was that he had me tested for various other illnesses. He didn't do much else. I was disappointed.

Did he give you anything conclusive on weather or not you have ME by the end?
 

helen1

Senior Member
Messages
1,033
Location
Canada
No he didn't.
To be fair, I've read very positive accounts from other patients about him. I've also read other patients accounts that were similar to mine.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I guess it seems like he is the leading authority on the belief that ME and CFS are two different things. I wonder what other doctors think of his opinion.

There are a lot of ME specialists or ME/CFS doctors around which think the same.. his isnt a strange isolated thought but just the other side of the fence of beliefs with this one could say. eg for example those who are responsible for doing the International Consensus definition for ME.. that states that CFS isnt ME and says the ME ones need to be separated from CFS.

Anyway..when one gets to the expert level of all this.. there is quite a few with Brian Hydes views that they are different.
 

Aerose91

Senior Member
Messages
1,398
Ok thank you. I ask because I'm currently seeing Dr Enlander and he is under the belief that they are the same.

@helen1 we're you a patient of.his in office.or did you do a Skype consultation? I'm wonder if I would gain anything from doing 1 Skype session with him.
 

Aerose91

Senior Member
Messages
1,398
Thank you. Monetarilly it will be a struggle for me to even afford 1 session with him so I will need to consider. Plus I don't know how well my doctor would react to me giving him a blood order from another ME doctor, ha ha
 

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
Don't expect any treatment with Hyde. It's my experience, and that of anyone I've communicated with who've also seen him, that he doesn't treat. Which is compatible with how I think he sees our disease.

He runs tests. If you need help getting disability insurance and you live in Canada, he's your guy. Nice enough fellow too.
 

Gamboa

Senior Member
Messages
261
Location
Canada
I'm just noticing this thread now. Have been a bit off-line lately. PEM and all.

I have been a patient of Dr. Hyde's for the past 2 years and have had a very good experience with him. His specialty is, and he doesn't claim otherwise, ruling out all sorts of possible other diagnoses that could mimic ME/CFS. One of his latest books I believe is called Missed Diagnoses and in it he explains all the other possible common and rare diseases that one could have without knowing it mostly because doctors are not doing a very good job of examining patients and ruling things out.

Since seeing Dr. Hyde I have had a massive amount of test procedures which, because I live in Ontario (the province in which he practices) are covered under our health care provider OHIP. If you don't live here I would imagine these tests would be extremely expensive and in some countries, nearly impossible to obtain.

Dr. Hyde is excellent, as someone else mentioned, at sorting out disability and medical insurance papers.

The area in which I have reached a dead end with him is that of treatment. This, of course isn't really his fault since there isn't any definitive treatment for ME/CFS yet. The only treatment I get is for individual problems that go along with ME/CFS, migraines for example, and then that is provided for by the doctor that Dr. Hyde has referred me to ( and he has referred me to many).

PM me if you have any more questions.
 

Thomas

Senior Member
Messages
325
Location
Canada
I'm a patient of Dr. Hyde's. He's an exceptionally caring and thorough docotor. But he does not treat at all - he just investigates and investigates and investigates some more. If he finds anything that is repairable he'll send you to a specialist. And he's great for LTD. But his tests are tiring and take a long time to complete. If you're looking for someone to talk about GcMAF, or antivirals or antibiotics etc he's not the guy. Unless he finds something blatantly and alopathically wrong he won't be of much help to you.

I live in Ontario and the tests are free to me so I didn't see a problem in going down that route to try and rule out other things even though I was sure I just had classic ME. If you're paying out of pocket I think his 18 months of testing could cost you upwards of $10,000. But in the event he finds something real and treatable it may be worth it. If he doesn't, then, well, you're back at square one just only with less money in your bank account.

Besides, he thinks most ME cases are misdiagnosis'.