CDC Roundtable, Multisite Study and Dr. Klimas’ Attempt to Permanently “Reset” Chronic Fatigue Syndrome (ME/CFS)

[adambeyoncelowe]

He has written a book. I have not read it so i can't attest to its content or accuracy.


I had a spect scan done by a dementia neurologist a few years back. I even got a copy of the images though they mean nothing to my untrained eye.

I've read the book. It's all very vague about the specifics.

 

[Alvin]

I've read the book. It's all very vague about the specifics.

I see, what does it say?
Is it the one he released recently?

 

[Sid]

I've read Hyde's book. It's full of bombastic claims and zero supporting evidence (evidence meaning replicated peer-reviewed research).

 

[adambeyoncelowe]

I see, what does it say?
Is it the one he released recently?

I'm not sure what the date was. It didn't look that new.

There's a free Nightingale Foundation book with most of the stuff he thinks in it too. He freely admits he can't read the SPECT, despite saying it's the only way to prove ME.

 

[Alvin]

I'm not sure what the date was. It didn't look that new.

There's a free Nightingale Foundation book with most of the stuff he thinks in it too. He freely admits he can't read the SPECT, despite saying it's the only way to prove ME.

There is a new one from earlier this year or late last year, it apparently caught the interest of a research team who decided to do a study based on its content using QEEG which i participated in a few months back (results late next year).

 

[Milo]

We are veering off topic but i will add this about Dr H.

It is always bad news when a physician chooses to work outside of our socialized health care system here in Canada. The Healh Care Act promotes ‘health care for all regardless of the ability to pay’- this doctor cherry picks patients, charges them 5000$ up front, and when all is done, there are no treatment. This doctor does not prescribe treatments.

All Canadians deserve equal and competent care across all provinces, from a health care system that will compile statistics, store blood sample and tissus for research, assess patients on a yearly basis, and build a network of specialists who will be motiated to research, find biomarkers, find subsets, address the many symptoms patients experience but most importantly in my opinion, will find treatments, and administer clinical trials in collaboration with the international community.

On the Dr Klimas topic, while i have not read HR post (i never do) i command the work of dr Klimas. I
wish her own words were shared via direct address to the patients rather than going through a controversial figure.

 

[Alvin]

We are veering off topic but i will add this about Dr H.

It is always bad news when a physician chooses to work outside of our socialized health care system here in Canada. The Healh Care Act promotes ‘health care for all regardless of the ability to pay’- this doctor cherry picks patients, charges them 5000$ up front, and when all is done, there are no treatment. This doctor does not prescribe treatments.

I can't defend the guy because i know little about him or what he does. I do recall reading somewhere that he said ME and CFS are different things, which makes little sense but without an explanation of what that means i have no idea what to say though i don't think this is correct
I have an appointment to see him next month and its covered under the provincial healthcare system. If he suggests something stupid i will say no which i had to do with many doctors, in a few weeks another neurologist wants to give me stimulants and antidepressants which i have already had life threatening side effects from (side effects they don't expect go in one ear and out the other). But if he is not prescribing treatments then it won't come to that. Also if he wants $5000 for something (testing?) then he won't be getting it, i don't have that kind of money to blow and you can't get blood from a stone. And if i had $5000 to burn i still wouldn't burn it stupidly, i would donate it to someone who does research like OMF. And get a tax receipt for the charity donation. On second thought i would get things i need with it, groceries, repairs, help with things i can't do, things that would make life easier and so on.

All Canadians deserve equal and competent care across all provinces, from a health care system that will compile statistics, store blood sample and tissus for research, assess patients on a yearly basis, and build a network of specialists who will be motiated to research, find biomarkers, find subsets, address the many symptoms patients experience but most importantly in my opinion, will find treatments, and administer clinical trials in collaboration with the international community.

I agree, if the government funded real research we could make headway to a treatment or cure.

I wish her own words were shared via direct address to the patients rather than going through a controversial figure.

No argument here.