Dr Byron Hyde - Canada

It's notable that in all the GMC's run-ins with Dr Myhill (completed cases Myhill 30: GMC 0; one in progress) there have been no patient complaints. Indeed patients have been hugely supportive of Dr Myhill.

 

I would be interested in getting to the bottom of whether SPECT scans can be used to positively diagnose ME as Byron Hyde has claimed.

When I looked at the full text of:
https://www.ncbi.nlm.nih.gov/pubmed/8542261

What it reports is an average difference in one area. No attempt is made to look for a threshold that might be used for a diagnostic test or report the sensitivity and specificity. To give an analogy, it is generally accepted that men are taller than women on average. However, any particular threshold won't be particularly strong in terms of saying if one is above a certain height one is male and below it, one is female.

Also I know somebody who attended Byron Hyde in Canada from outside Canada. This involved a huge expense. Despite all the talk from Byron Hyde that SPECT scans are easy to read, he can't do it himself. Byron Hyde never got back to this individual with definitive results from their scan. He was hoping to get an expert in another country to analyse the results, but this never happened.

He also said one needs to be careful how much mental exertion one does before the test as that can affect results. But it didn't seem easy to know when somebody had done too much or not enough mental exertion to affect the results.

It is a pity to my knowledge he has never published any peer-reviewed papers on this topic.

A discussion on the utility of SPECT scans for diagnosis of ME/CFS has been split from this thread, starting with a copy of this post.

 

Respectfully, I would recommend keeping the name Montoya and Lipkin entirely out of this thread. The abuse they allegedly engaged in has nothing to do with what Hyde, and several of his contemporaries (Myhill, Speight, Gordon, KDM) have been disciplined for and has absolutely nothing to do with them being ME clinicians/researchers. Let’s not engage in conspiracy theories or drag down people’s names by association.

 

This is a bit ridiculous. ME patients have committed suicide due to lack of adequate pain management. It’s called myalgic encephalomyelitis for a reason. It’s a lifelong, incurable disease that can cause unremitting pain.

My bet is that he didn’t even prescribe the seroquel or klonopin specifically for psychological treatment, but rather for sleep initiation. These problems don’t just suddenly improve and go away. There is no progress to monitor. They’re palliative treatments, nothing more.

 

You are missing the point @weyland. There is nothing wrong in prescribing as required, however drs have a duty to record the effect of the treatment and monitor risk of addiction, overdose and suicide.

 

This is not about this doctor’s belief about what causes this disease. This is about a physicians with an unconventional practice, messy medical record habits, possibly unethical use of foundation money, billing for psychotherapy without making any mention in the medical records, and so on. The initial complaint was a patient who has been billed 825$ for copies of her medical notes, not for legal purposes. It took an inordinate time to get them and was charged an inordinate amount. Then there were unsecure internet medical consultations from Italy (I wonder whether he billed the government for that?)

There were several issues when the college investigated, some more worrisome than others.

In the end this is not about the credibility of his claims, more about the safety and safe management of his patients.

 

I thought Hyde in his books doesn’t discuss treatment much (confession not read!) as he believes ME is due to enterovirus which he points out there is v little treatment for?

 

I've read several times over the years that Byron Hyde only diagnosed, but did not offer treatment.

 

I would like to see all of these charges (I mean accusations) explained by someone knowledgeable about Canadian medicine and practice. The Ontario statement is just Greek to me. Would like to see for each part what the proper Canadian physician is meant to do. I don't understand at all the context for $825 charge for records, I don't understand how Canadian physicians are meant to record things, etc.
On a different tack, I don't have the references of where "we" have surrounded ourselves with people who embroil themselves in scandal." Please explain to me what happened, where, that you saw ME patients either "surrounding ourselves" or "jumping to the defense....tarnished history." Montoya for one had only the most elite background of success and respect by colleagues at America's second most prestigious university, and in a medical school liberally sprinkled with Nobels and other super-acheivers of medical science like Ron Davis.
It is very unfortunate that Montoya allegedly (not yet convicted in a court of law) advanced sexually on employees, which makes him part of a disturbing set of people found all around. He did a lot of good such as launching the valuable Jarred Younger, and getting ME into on otherwise indifferent if not negative medical institution.
Hyde's work with scanning is being born out by many prestigious investigators and grants from Japan to Cambridge MA to Weill-Cornell/NY Hospital to Birminham Al and beyond.
Certainly we didn't "surround ourselves." We went to people who were willing to help us. And did. There aren't many. Who's jumping to who's defense?
The only reason we suffer negative attributions is well-funded public relations on both sides of the Atlantic, government subsidized and dedicated to career progression of those behind it. I have yet to see anyone accuse us of vaxxing or anti-vaxxing. Of course a group of UK psychs who are very rich thanks to crushing patients and faking medical research accuse us of a lot of stuff -- that's how they earn attention and money and they are very good at propaganda.
In Hyde's case it is possible, and in Speight's and Myhill's it is certain that the doctors became embroiled in scandal very much as a function of daring to treat ME with means other than pernicious CBT and punishing and disabling criminal assault via GET.>

 

Maybe he was doing these with some patients, but one of the complaints I have heard about him several times was that he was only offering a diagnosis but not offering anything in the way of treatment.

 

There are biological tests that can be used together to make diagnosis as many docs not in trouble have done. You have been lied to by government about "aren't any tests for me." What there isn't is the $500 million in government money needed to run these tests through enough accreditation for CDC to back it. And there won't ever be that $500 million. I can't comment on Hyde and money as I don't know the incidents and don't know the Canadian law and customs.

 

Do the complaints refer to 30 years ago?

 

The blackening, as said in another reply, is due to the very successful and part-government funded pr especially by US psychs but also by CDC and NIH basically to serve those who have successful careers based on destroying lives of ME patients. That the UK charities refuse to fight back in any meaningful way is also part of the problem. "in actual fact......"

 

You mean like how the exposure of how the PACE report was fiddled in UK court just ruined the BPS psychiatrists? How Dave Tuller's exposés of Esther Crawley's fake science and child exploitation against UK law and Journal regulations has completely destroyed these people and their careers? Oh wait, they're more rich and successful than ever. We must be getting something wrong.

 

I don't think it was about treatment either, but that's not the point. His book and its subsequent editions were, so far as I know, the source of what some would refer to as the 'definitive' Ramsay criteria. I'm told it's considered the gold standard so far as the UK is concerned. However, like every criteria yet devised, it appears to contain a flaw, in this case in its presentation/form (as CCC does). I was responding to the idea that publishing in a book is a means of ducking peer review. I happen to agree with the idea that this is rather unhelpful. However, if we're going to throw that charge at Dr. Hyde (can't call him Dr. though anymore, can we?), and certainly it would be warranted if we've had years of claims but no followup as far as evidence in the form of published research, then it's misleading to omit that even Melvin Ramsay made the same error.

The thing is that there's a good deal of work and effort involved in publishing research, and it might just be more difficult to pursue if 1) one is operating a clinical practice, especially when working in an area where support may be hard to come by, which is evidenced in some of the verbiage in the charges against Hyde, and 2) one is getting on in years, as was the case with both Hyde and Ramsay. I don't mean it as a slight against Ramsay to suggest that if he'd published his criteria in a peer-reviewed journal that certain aspects of our situation might not remain as grim as they do some 30 years later.

I can't and wouldn't defend Hyde if he did things like bill inappropriately and/or not follow the rules. However, I strongly suspect that he's not the only one to have been, let's say sloppy, and he in particular had a big bullseye on his back. That's why I embedded the video of his talk at the IACFSME conference from 2011, because what he had to say is worth hearing even though there isn't really a formal presentation of his remarks, his ideas, the issues he points out rather eloquently. Aside from his book, that is. But make no mistake--I chose the larger image of Ramsay's book specifically in response to the correct but perhaps somewhat out of context remark that publishing books ducks peer review. Who knows if Ramsay could've gotten published, even? Perhaps he did submit his criteria and was rejected? Good chance, I'd say. In that case, would it have been better to do the book or do nothing at all?

One thing I will say about Hyde is that even though his position may seem rigid to some he did seem to stick to Ramsay pretty tightly, and I don't think I'd compare him to either KDM or Myhill. Yes, he charged a lot of money, and it would suck if those patient complaints are indeed valid. What he seemed to offer mostly was validation in the form of proper investigation and, when appropriate, diagnosis. I seem to remember that he made no statements about treatment, and if anything, that it was understood that he did not state, at least not publicly, that he offered any. It was diagnosis-only, for the most part, for people who had no other options and required expert opinion when faced with the sorts of situations ME patients find themselves in when they have to leap over the goddamned moon just to prove that there's actual illness. KDM chased a lot of dubious nonsense over the years & teased research that rarely appeared, and Myhill left just enough damning content on her website to invite all sorts of headaches that could've been avoided even if she did believe every word of it. Hyde's fairly strict adherence to his or Ramsay's vision of what ME is puts him a different category for me, even though I found it perhaps a bit stubborn and also think that the way some or much of this was presented by the Hummingbird was and is a tad extreme.

Hyde could be blatantly guilty of every charge leveled against him and that wouldn't change that he represented a big headache for a lot of powerful entities. I really don't want to go down a conspiracy rabbit hole, especially because he did manage to work in this area for decades, but it's hard to deny that those entities would not and will not benefit from his removal. That's about as much as I have to say about that. However, I'm going to be condescending and assume that there are people who have never seen this video. I'm going to (obnoxiously) embed it again because it's one of the most powerful and important talks that I've seen in my 20 years ill. Agree or not, his first-person account of Straus is fascinating, and this is one of those things I think every PWME should see & be aware of.

 

My understanding is that the standard treatment for ME is managing pain and sleep. Am I missing something?

 

I haven’t read all the comments and I’m not going to. I am very sad at the way Dr Hyde’s career is ending.

He has helped many, many people get diagnosis and receive insurance benefits. Often without even charging them a dime. He went out of his way to help patients, even from other countries, at his own expense. He was a very caring man.

Yes, he had his faults. He was far from perfect, but who is ? He was from another era, he didn’t know about computers, he didn’t know about data breach, firewalls or security, and so forth.

His main mistake was to want to keep going. For the sake of his patients. For many years, the College had tried to get rid of him. They don’t like old doctors, too many risks. So since he wouldn’t let go, they found a way.

He worked for us for decades. Let’s not forget it.

 

This is inaccurate @Dechi. A patient complained about being charged 825$ for medical records. This prompted the College to investigate. And seemingly, the more they looked, the worse it got.

Edit to add: in no way am I blaming the patient as no one deserves to be billed with 825$ for accessing her own medical record. Who owns the records?, that is another question for another topic.