Dr Byron Hyde - Canada

[Dechi]

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.

Well, I know for a fact the College was after him for many, many years.

About the complaint, his fee was 200$/hour. It’s no secret, it was on his website. That’s what he charged for his time. I’m not going to speculate what happened.

 

[Milo]

Well, I know for a fact the College was after him for many, many years.

About the complaint, his fee was 200$/hour. It’s no secret, it was on his website. That’s what he charged for his time. I’m not going to speculate what happened.

The patient was asking for clinical notes, not legal matter. Every physician has the obligation of writing clinical notes after every visit. This is included in the fee that can be billed to the ministry, if the patient is in Ontario, and would usually be covered if you are paying for a visit. If he had done this, it would have taken a second to print them off.

 

[daftasabrush]

Yep, it's pretty well-known that Hyde believes that ME can only be caused by enterovirus. But then again, many doctors also believe ME is encephalomyelitis of the brain and spine, as the name suggests, which has never been proven to be the case either. Then there are doctors who think CFS and ME are separate diseases, like even Michael Sharpe recently admitted. And finally there are doctors who believe ME is a fictional, invented disease and the disease is believing that ME exists (yes, there are those as well). None of these doctors have had their license revoked.

Autopsies have proved the brain and spinal cord damaged caused by ME, plus some brain scans too.
Hyde never claimed to have proved the enterovirus theory.

 

[daftasabrush]

@duncan But it's Byron Hyde's views that are used by a small group of ME patients to say "we have the true ME, you all have something else". So I really don't think he's helpful to the ME community as a whole. Also, pushing unvalidated theories as scientific fact is not helpful to our community as a whole. In my opinion.
This is just my perception and may be incorrect; especially as I've only been in the ME community for a year.

It's not Hyde's fault or responsibility that a group of patients do this - it seems to be only a minority of his followers that do it. They are just loud and persistent.
The ICC has a similar group who reject everything else, and claim only "true ME" (whatever that means) can be diagnosed by the ICC. I am a huge fan of the ICC, but to rule out the CCC that it is based and very similar to seems bizarre, as does the claim that a "true ME" can be clearly identified (and ask others ruled out) when so much is unknown in the Science yet.
We might find an additional factor that's needed for accurate diagnosis in the future.

Regardless of people's view on Hyde's Enterovirus theories he has done a massive amount for ALL of us in terms of helping with the stigma, promoting biomedical approaches and doing his utmost to find out more about the illness.

I feel some commenting here should have read up on Hyde's research and publications before spouting criticism of his science.
Some would do well to know the technical definition of the word "Syndrome" and why that word is entirely inappropriate, and in fact goes against science, for any people meeting the CFS criteria.

The term "syndrome" is a subtle scientific slur.

 

[daftasabrush]

I can't turn on him because I never swore undying loyalty to his fan team in the first place. Just commenting on the agreed statement of facts, his level of organisation sounds absolutely appalling, which is disrespectful towards his clients and colleagues, and can have real, serious negative consequences for them.


It's not a question of ethics, and nobody has crucified anybody. I don't know enough about him to balance with deserved praise, sorry, my post wasn't intended to be a full and balanced review of his lifetime of service. Before I had ME I used to give courses on Time and Self Management to the employees of one of the most renowned medical research institutions in Germany, so it was that aspect of the agreed statement of facts I noticed and chose to comment on. I wasn't being ironic - people that disorganised can be a f***ing nightmare to work with, and ditto if you are dependent on them as a customer or patient (for example having to wait 8 months for an important document that should have been available at the push of a button and being horrendously overcharged for it). If he can't manage record keeping or other paperwork he can delegate it to an assistant or secretary, patients and colleagues shouldn't have to suffer for it.




I'd rather not recruit any more KDMs or Myhills because they can cause more harm than good. In fact "experts" of that ilk hardly need recruiting, they turn up with their plausible theories and high prices rather too readily. No use at all to me, sorry. In fact, if you're happy throwing phrases like "feeding frenzy" around, sometimes it feels to me as if ME sufferers are the meal.


That's not good enough, sorry. They need to be bloody good, not just have a few plausible ideas, high prices and a cult following.

I don't know about KDM - he was importing medications illegally which is a huge thing - but Myhill - while pretty rebellious in her approach - has done significant mitochondria research and truly wants to get to the bottom of ME, and as far as I have heard she treats her patients with respect.

I would not class myself as a huge fan of Myhill (I find her views a bit too rigid although I like much of her wor) but we need more doctors like her! And like Byron Hyde!
We need more doctors dedicated to helping us, and to fighting those that harm us.

Quick shout out here to Myhill's advocacy - her Medical Abuse in ME Patients petition, and her formal complaint against the PACE authors demanding they be investigated - which she isn't backing down on.

Tremendous benefits have been gained from those of us who never saw Hyde as a patients, please do not underestimate the influence of him standing with patients when public bodies, most doctors and the public at large continually dismissed and harmed us, and in the days before social media where a minority of science publications were better able to control - and limit - the information about the reality of ME.

 

[daftasabrush]

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.

If anyone has a reference for the complaints against Myhill please post - I heard she was the most investigated UK doctor and thought that info came from a FOIA request. I can't find any source other than Myhill.

 

[Esther12]

I don't know about KDM - he was importing medications illegally which is a huge thing - but Myhill - while pretty rebellious in her approach - has done significant mitochondria research and truly wants to get to the bottom of ME, and as far as I have heard she treats her patients with respect.

I would not class myself as a huge fan of Myhill (I find her views a bit too rigid although I like much of her wor) but we need more doctors like her! And like Byron Hyde!
We need more doctors dedicated to helping us, and to fighting those that harm us.

Quick shout out here to Myhill's advocacy - her Medical Abuse in ME Patients petition, and her formal complaint against the PACE authors demanding they be investigated - which she isn't backing down on.

Tremendous benefits have been gained from those of us who never saw Hyde as a patients, please do not underestimate the influence of him standing with patients when public bodies, most doctors and the public at large continually dismissed and harmed us, and in the days before social media where a minority of science publications were better able to control - and limit - the information about the reality of ME.

I think that Myhill's advocacy efforts have been unhelpful. If we want to challenge junk-science like PACE we can't do it while promoting 'treatments' with an even weaker evidence base without looking unreasonable.

 

[Dechi]

Regardless of people's view on Hyde's Enterovirus theories he has done a massive amount for ALL of us in terms of helping with the stigma, promoting biomedical approaches and doing his utmost to find out more about the illness.

This is the absolute truth, and this is what we should remember. I don’t understand why people keep stepping on someone’s who’s already down...

 

[daftasabrush]

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

Hyde was a researcher too. And yes, you are missing a great deal. Just because most people get shoddy treatment based on 2 symptoms does not mean that is an appropriate standard of care!!! Nor is that even good enough for symptom management for many. It most likely helps those with mild or mild / moderate illness.
Pacing of some kind and Illness management strategies should always be taught to avoid or limit the crashes and help try to stabilize the illness.

Many people are refused tests that later turn out to have other conditions affecting ME which remain undiagnosed, including sometimes patients with Lyme misdiagnosed with ME or CFS, untreated MCAS causing constant vomiting, EFS, Fibromyalgia (which has some licensed meds), thyroid issues and a whole bunch of things ruled out by diagnosis that can develop later on and worsen ME symptoms.

The International Consensus Criteria Primer contains a bullet point list of suggestions for treatment for the different symptom categories.

Please do not mistake this illness for "pain plus fatigue" as many doctors do - those occur in many illnesses, our symptoms are far more varied and every year the illness kills people.

If you mean did Byron Hyde claim to have some wonderful cure? No, he didn't, but he properly investigated symptoms that most doctors would dismiss, allowing proper treatment for many things that impact the illness.

 

[daftasabrush]

I think that Myhill's advocacy efforts have been unhelpful. If we want to challenge junk-science like PACE we can't do it while promoting 'treatments' with an even weaker evidence base without looking unreasonable.

She's not pushing a specific "weaker treatment" and has not created some kind of branded treatment like we've seen from Gupta, the Lightning Process, the Perrin Technique or many others. She's addressed the actual science and ethics failings involved in PACE.

Are you aware that Myhill's research is cited within the International Consensus Criteria for M.E.? She's done a number of mitochondria studies.
I don't see any petition from her demanding we adopt her treatments - yet there's her petitions that we stop getting harmful treatments and that those doing harmful and unethical crap should be investigated for it. Like the fact the PACE trial recruited everyone without declaring the conflicts of interest of the authors, or the part finding by the social security system - that's a major ethical violation of informed consent.

 

[Hoopoe]

Are you aware that Myhill's research is cited within the International Consensus Criteria for M.E.? She's done a number of mitochondria studies.

Her mitochondrial energy score test just failed an independent replication.

 

[daftasabrush]

Any response from Hyde yet?

I think it would be interesting to here reflections on Hyde's work by those posting who haven't seen it before.

• The Little Red Book (A new and simple definition of Myalgic Encephalomyelitis and a new simple definition of Chronic Fatigue Syndrome)

A few facts not mentioned here on Byron Hyde

• He's medical advisor to the 25% ME Group, for the most severely affected
• He supports the Canadian Consensus Criteria as the best available at the time (p30, little red book)
• He founded the Nightingale Research Foundation to investigate ME more
• He published a testable set of diagnostic symptoms at a time when all symptoms were self-reported, and patients perceptions were being questioned with assumptions that all shooting might be "a variation of normal" - something still the case now
• He spoke McEvedy and Beard at some length, and challenged their "hysteria" explanation for ME, and the foundation it was based on, and provided significant irrefutable evidence against it
• He has analyzed the CDC's Holmes and Fukuda criteria, and makeup of the supposedly expert panel, and the inappropriate lack of knowledge and inappropriate criteria which have caused us so many issues
• While he believes in an enterovirus cause to ME, this isn't in his suggested M.E. criteria - in fact he doesn't insist that obvious virus or infection symptoms are present - this is been a huge difference to what some ME patients claim is the only "true ME" - Hyde actually says "...where in most, but not all cases, an infection is evident."
• He holds many views shared by more mainstream (popular) M.E. researchers, including that the are 2 phases in ME (early phase - excessive sleeping for instance, then chronic phase), that ME and CFS are not the same, that CFS is a common misdiagnosis for other illnesses, that ME is a serious disease

 

[Mij]

Please do not mistake this illness for "pain plus fatigue" as many doctors do - those occur in many illnesses, our symptoms are far more varied and every year the illness kills people.

My best friend died from ME complications 3 years ago, so I am very aware. He was lured into trying many long term abxs for so called "chronic lyme" and other pet theories suggested by 'ME specialists' because of desperation. He was severely ill for 18 years.

I am more interested in figuring out the pathophysiology of PEM, energy metabolism and the autonomic issues that keep us disabled.

 

[adambeyoncelowe]

My best friend died from ME complications 3 years ago, so I am very aware. He was lured into trying many long term abxs for so called "chronic lyme" and other pet theories suggested by 'ME specialists' because of desperation. He was severely ill for 18 years.

I am more interested in figuring out the pathophysiology of PEM, energy metabolism and the autonomic issues that keep us disabled.

I'm so sorry to hear this. It's a sobering reminder of what lengths we go to in order to feel better.

 

[Mij]

He was also a patient of Dr. Chia for over 11 years and tried many treatments. That didn't save him either.

 

[duncan]

My best friend died from ME complications 3 years ago, so I am very aware. He was lured into trying many long term abxs for so called "chronic lyme" and other pet theories suggested by 'ME specialists' because of desperation. He was severely ill for 18 years.

He was also a patient of Dr. Chia for over 11 years and tried many treatments. That didn't save him either.

I am sorry your friend died. It sounds to me he had caring doctors who tried to help him, and he was very brave trying to follow their recommendations.

 

[Milo]

He founded the Nightingale Research Foundation to investigate ME more

Funny you say that, because the college report mentioned his foundation as problemathing

Unprofessional communications, boundary violations, and conflict of interest

Dr. Hyde is the founder of a charitable foundation. Dr. Hyde wrote newsletters for his charitable
foundation, which he mailed to the patients in his medical practice.

In these newsletters, Dr. Hyde provided his personal opinions that the compensation of
physicians in Canada is inadequate, complained about the College’s requirements of physicians,
solicited patients to make donations to his charitable foundation, and disclosed inappropriate
personal information about himself and of his patients

 

[Saz94]

From Countrygirl on PR:

"I wouldn't be at all surprised that, as one of the older generation, he wasn't familiar with keeping records on a computer, but the accusations, I have been reliably told from a source I trust, are a trumped up by a medical profession which is keen to get rid of a maverick who has served us to the very best of his ability for decades."

https://forums.phoenixrising.me/thr...tients-for-decades-has-licence-removed.77413/

 

[Milo]

From Countrygirl on PR:

"I wouldn't be at all surprised that, as one of the older generation, he wasn't familiar with keeping records on a computer, but the accusations, I have been reliably told from a source I trust, are a trumped up by a medical profession which is keen to get rid of a maverick who has served us to the very best of his ability for decades."

https://forums.phoenixrising.me/thr...tients-for-decades-has-licence-removed.77413/

Look, physicians are obligated to Continuing Medical Education hours each and every years. Considering he has had many many years to get it right, clearly he did not do this. And physicians are not obligated to use a computer, and may opt for paper only records, but they still have to make sense and provide key information.

And regarding the maverick thing, for one, you could decide to conduct proper research, apply for funds at the national research agency, seek ethics review, find collaborators, and publish in a peer-review journal. This is how physicians who want to further the field do. This is how it’s supposed to work.

 

[Dolphin]

Byron Hyde has been described as a researcher as well as a clinician. As a clinician he undoubtedly helped some people. As a researcher, I was disappointed with how little he has published in scientific forums. In the last 25 years, I can only think of three things:

(I) as one of a group of authors that reported on isoprinosine/Imunovir (I don’t think he was the lead or corresponding author);

(II) He wrote a rambling article in a journal, possibly a psychiatric journal. I think it involved some anecdotes but no real hard data that I recall;

(III) He presented at a conference on finding a rate of around 6% of thyroid cancer. However there was no control group. The general feeling in medicine seems to be looking for thyroid growths can find a lot of issues that very often won’t lead to long-term harm in themselves, but it could lead to over-treatment. For example, thyroid surgery can lead to vocal cord damage. So it seems more likely that this was a case of “if you look hard enough you will find”.

So considering how close he was to the Nightingale Research Foundation, this was a low quantity of publications. I hope he will publish more now that he has retired from clinical practice.