Dr Byron Hyde - Canada

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.

 

https://www.nightingale.ca/our-founder
https://www.nightingale.ca/
https://www.hfme.org/

 

Fwiw, I have little trust in the College of Physicians and Surgeons of Ontario.

The CPSO goes to great lengths to protect physicians that cause harm and death...as long as the physician toes the CPSO line.

The biggest reason Canadian patients have great difficulty getting any off-label meds for ME symptoms (like LDN) is a fear of losing their license from CPSO (and their other provincial counterparts).

I'd bet dollars to donuts that CPSO does more harm to patients on any given day than Hyde did in all his years.

 

I heard Dr. Byron Hyde was very successful at helping patients get disability. They are sending a message to other doctors who are not part of mainstream medicine. I doubt that it is that he suddenly became incompetent.

 

The ME doctor I saw 28 years ago was partners with Dr. Hyde, they went their separate ways just before I started seeing him. He was a diagnostic doctor and helped us get disability, but stopped seeing ME patients in 2000. I sensed that he was being carefully monitored not to over diagnosis patients.

 

He's supposed to be having a book about ME published soon. And I had no idea he practiced psychotherapy. Did he have training as a therapist? I mean, are GPs in Canada allowed to provide psychotherapy?

 

Who would you recruit to see ME/CFS patients then? Neurologists seem unwilling to even go near an ME/CFS patient, let alone hand out a diagnosis, based on my own experience and others'. We are left with the BPS folks as it is now, which is not good enough. People are completely dependent on having an actual diagnosis in order to for example receive any sickness benefits, and if there are no ME/CFS clinicians, there are no diagnoses to be made.

Yep, this is often overlooked.

 

News to me too.

From what I understand, only licensed (psychiatrist, psychologist, social worker) can use the term 'psychotherapy' whereas other 'therapists' use the term 'counsellor'.

 

I got my diagnosis from the university hospital in Berlin, I had to wait 9 months for an appointment and do a whole load of exclusionary tests with a local GP before I was even allowed to go. Now that they don't see patients from outside Berlin, I don't know where I'd get a diagnosis from. I suppose I'd like to see the situation change so that non-private doctors within the health system are better educated and will give a diagnosis.

If it hadn't been possible to get a diagnosis from Berlin I would have done without. I could easily have gone to Belgium to KDM but did my research and decided not to - I didn't want to pay a couple of thousand for him to order dodgy tests from labs owned by his wife, and follow his own pet theories which haven't been validated (he doesn't publish much) and which would possibly make me worse (plenty of people have deteriorated after seeing him). I don't believe that anything is better than nothing.

If I needed sickness benefits it isn't as simple as just getting a ME diagnosis in Germany - I would be forced to co-operate with rehabilitation before being eligible for benefits, which means forced exercise in a clinic for depression. The situation is completely shit here. I haven't been near a doctor for two and a half years, and if I did, or ever had to go to hospital, ME is the last thing I'd mention.

I understand that those who are more severe than me will be more motivated to try stuff, and maybe I would too. Also those who need sickness benefits will try to jump through all the hoops and get it (including accepting a diagnosis of depression just to get half a sickness pension, I know people who have had to do that here). I don't have the answers, the situation is absolutely appalling. If the only way some people can get their benefits is by getting a diagnosis from a private doctor then I don't blame them, perhaps I'd hold my nose and do it too. But more private doctors isn't the long-term answer, it's getting the NICE guidelines changed, educating doctors in the health system, and trying to do what we can to dismantle the BPS machine.

 

A lot of sides to this situation. Regardless of the view point, this outcome will harm the reputation of our community - which is already blackened to a crisp.

IMHO some in colleges always have the knives out for alternative physicians.

But as I said, there are many sides to this situation and others.

 

This.
+ that it will scare others from thinking out of the box.

 

Sure, but if you were going to only criticize every ME/CFS clinician and/or researcher for mistakes or shortcomings, you'd have run out of options years ago, and you'd still be coming up short. None of them has gotten it right yet, at least not conclusively, and many if not most blunder their way through their ME/CFS tenure. We are a tough nut to crack. But at least some try.

Word gets around, so it's little surprise there are not many eager to toss their lot in with us. The few that trickle through to us, yes, we want them to be sharp and have integrity. But I think that holds true for every doctor/researcher in any medical field, just as I believe the lion share of each of them end up bringing their own baggage to bear.

There's a changing of the guard going on in the ME/CFS doctor/researcher community. If we're going to shine a light on the purported deficiencies in any given ME/CFS expert who is punching out for whatever reason, I'd recommend making sure we try to remember their merits, or we may have a hard time - maybe harder than before - getting good candidates to replace them.

 

He is 82 now. He wasn't 30 years ago.

 

Are there any complaints extant from 30 years ago?

 

Byron Hyde was not run out of town before he ever set foot in it. He was an established ME/CFS doctor for at least the past 30 years. He made claims that shouldn't have been made considering that there aren't any tests yet for ME/CFS. My view is that he basically ripped people off financially.

 

My understanding is that he ruled out other illnesses that perhaps a GP or specialist might not order. But yeah, charging $5000 is a rip off.

 

Publishing a book in medicine is like avoiding peer review and selling your thoughts to desperate patients.