Dr Byron Hyde - Canada

Explain to me the ethics of crucifying one of our own, please, without balancing criticism with deserved praise - especially over "disorganised". Unless you were being ironic.

On second thought, spare me - I'm not interested.

 

Sorry to hear this, I think he helped some people. I know of one person in the UK whose ME illness he helped diagnose and document as an expert witness for a legal case, I believe (but this was over 20 years ago).

I agree he was something of a maverick and no doubt overly dogmatic in his claims of their being only 'one true ME' and regarding CFS as a non-diagnosis, while simultaneously referencing studies of 'CFS' patients to prove his aetiological basis of ME.

Some of the charges about record keeping and admin malpractice look a bit flimsy.

Ha! In the UK at least, I'm sure we've heard the bean counters in charge of NHS budget claim this (ME/CFS) is a condition that GP's should be equipped to deal with and no specialist referrals are necessary.

Well yes... welcome to the world of ME/CFS, this isn't baking a cake. But I think this charge is a matter of opinion. Some GP's can have an opinion boarding on nihilism about the value of non-routine diagnostic investigations; but for the patient with ME whose tests have hitherto been continually reported as normal, a discrete finding of some relevant pathology, finding a clue, can be meaningful and help restore their sanity that while what they're dealing with is obscure it is tangible, real, and not imaginary.

Fair enough, caution is warranted here, I'm not in favour of long term benzos either, but still sounds like something of a technical infringement.

Perhaps time for him to retire, but sorry to see him hounded out, as that's what it appears to be on first impressions, though I could be wrong. There seems to be an increasing intolerance for heterodox thought, and overall I'm not sure if that's a good thing for us as a community and society, or not.

 

'Crucifying one of our own'? This isn't tribalism or religion. If he's running a poor service for patients (one it looks like he wasn't actually supposed to run) then it's right that he stop, regardless of whether we agree with his opinions or not.

What about the patients charged hundreds or thousands of dollars for his 'help' who weren't helped, or who had a poor service, or who were treated unprofessionally? Does your sympathy extend to them? Are they 'our own' or not?

 

Look around. See many ME/CFS physicians? They are being run out of town before they ever set foot in it, not just by academia, but by patients in threads like this.

Ah, you're on the side of patients. Good. Let's try working on recruiting a new crop or researchers and clinicians instead of sharpening our tongues on the career corpses of the old - because I can assure you, the latter contributes little to that end.

 

ME patients are helped by good specialists. If a specialist is making mistakes and not helping patients, then that isn't helping patients. Of course many patients have been helped in the past, and that's laudable, but it's not enough to excuse poor practice now.

ETA: And if Hyde has handed in his licence, it doesn't matter what we say here. No one here is harassing him or hounding him out of his job. We're just commenting on what he has admitted to doing.

 

@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.

 

Retirement is hardly suspicious!

KDM was also overcharging and illegally importing medication
Montoya sexually assaulted his employees and called it "cultural differences", and also repeatedly failed to publish anything much while receiving millions of funding.

While Hyde has done a great deal - and had really fought for patients - he frequently holds opinions that do not have adequate evidence behind them and calls them facts. Myhill does the same. I don't think Hyde has changed any element at all of his views since the 1970s, maybe even since the 1950s, as if none of the science since has been useful or has added to the picture.

Using the Nightingale Foundation newsletter to solicit donations is a particularly bizarre complaint!!! What charity does not ask for donations?
There's a few other things in there particularly aimed at attacking his work on ME.

Some - but not all - of the "only Hyde" promoters are irritating - as if only one clinician can possibly be capable of a diagnosis - and it's like that seem to forget that most of us either don't have the money or the ability to travel to ever get a hope of having him confirm a diagnosis. It's a call to their "special status" and damn right rude to dismiss others unable to get to any famous specialist to help.

 

It's certainly a shame that doctors like Montoya and Hyde have got into bother, but I think it harms us more when we surround ourselves with people who embroil themselves in scandal. People already think of us as anti-vaxxers and conspiracy theorists, so every time we jump to the defence of people with a tarnished history, it kinda proves that point to many outside our community.

 

He knew what he was required to do and could have got an assist to do much of the organizing.

Notes are often made during appointments, and not documenting test results etc - clearly out of order. Hyde could have fought this but instead he admitted it all - I presume he would have been able to resign during the investigation without having this finding against him but he didn't.

It's clear that some of this comes from patient complaints - both the person who was forced to wait over a year for records and charged over CA$800 and the patient who was an employee.

I really hope he will make a public statement soon.

 

Yes, that's exactly what a small group of patients do - we have the "true ME" because we were diagnosed by X

 

Pick a ME/CFS expert. They all have strengths and weaknesses. Certainly the ones I have met, and I've met several prominent ones. I could write to those strengths and weaknesses at any time. Should I, I hope I would address both, that I would be fair, that at the very least I would offer up some gratitude for the effort contributed, however poorly, to our community which is generally bereft of interest in our needs, our health, our overall pitiful plight.

If we want to look to the future, it might be wise to deal compassionately and intelligently with the past.

 

Many new clinicians are joining the field, and that's being helped by patients providing funding and some charities now offering funding for PhDs also. This never used to be the case.

Many of the older clinicians started to specialise after one of the outbreaks hit their area - but there's far less outbreaks in recent decades.
New ones often have some personal connection with the illness - Ron Davis for example, Robert Phair who developed the metabolic trap theory based on Ron's Severely Ill Big Data Project. Mitochondria specialists also joining.

Hyde could have avoided this situation by following the requirements be signed up to agree to - the conditions of his license basically.

A big factor in the lack of ME/CFS doctors is the lack of treatment options - no licensed drugs and a horribly complicated illness. Patients are overwhelming supportive of the doctors that can and do treat us - and those that don't know much but are willing to learn and listen patients.

 

I don't think anyone has been unfair to Hyde here. He's admitted to several things, and we've commented on that. We all make mistakes, of course, but some mistakes are riskier or carry more serious consequences.

 

Until they slip and fall, evidently. Then what preceded is forgotten.

 

No one has forgotten anything. Many patients have been helped, but patient testimonials of Hyde have always been mixed. Some have felt ripped off and some have felt he's rescued them. It's not as simple as 'He was great, and then he fell because of old age.'

 

Perhaps a reason for a lack of scientific progress is some of the "specialists" and their weird ideas. I think that is easy to see in the case of the CBT/GET proponents, who are the most successful and have influenced public perception, textbooks and guidelines (it's easy to see because their theories are contradicted by our lived experience and their success has also exposed them to greater scrutiny). It's more subtle with the biologically oriented specialists but I think they create confusion, make us patients look crazy when in reality we are just grasping for straws and don't understand how flawed some of their ideas are, and by distracting us with promises of a cure, or at least some "real treatment", as well as fueling "real ME" politics they also make it more difficult to unite our efforts and focus on what really needs to be done.

The reality is simple and uncomfortable. We are facing a difficult scientific problem and need to persuade politicians and scientists to put some serious effort and money into solving it.

 

There may have been failures by the doctor. These are to an extent understandable. The greater failure is on the part of the regulatory and licensing systems. It is entirely foreseeable that by the age of 82 people may be running into difficulties which they are unable to recognise themselves. That is supposedly why there are regulatory and licensing systems.

 

Davis and Phair are not clinicians.