IACFS: Dr. Byron's Hyde booklet on ME

[Dolphin]

Ah, thank you Dolphin, i was just beginning to wonder what definition he uses for diagnosing M.E. Im also interested to know why others dont also use this criteria, maybe they do but i would like to find this out. I think the idea of the new ICC criteria is to stop M.E from being a wastebasket diagnosis of exclusion and make it a positive diagnosis if you meet certain criteria. In the U.K it is on;ly by ruling things out and being left with nothing that you get a diagnosis of M.E or C.F.S. This has to be wrong when there are now so many proven abnormalitites that are similar in most patients.
Of course because we dont have adequte testing in most cases the chances of a missed diagnosis are high. I have read some work from a hospital ion Newcastle in the U.K that also found a high missed diagnosis rate and it is terrifying to think many of us could have a treatable illness that has been missed, they found a misse diagnosis rate of 40%

http://www.rcpe.ac.uk/journal/issue/journal_40_4/newton.pdf

Just to point out regarding the Newcastle study: what it found was that 40% of people referred to the service had a misdiagnosis. These hadn't been given a solid CFS diagnosis and then said it was found to be a misdiagnosis. Sometimes I've seen this misrepresented.

I think everyone with complex health [problems should be fully screened in the way the Newcastle study and Dr Hyde do to find out what people really have.

I think what Newcastle does is good. I'm not sure whether we will get to the stage that everyone gets all the test BH likes to do. I also think if a service tried to do all that testing, it would soon become apparent the large cost involved i.e. the "CFS service" system may not be the best to get such testing; not having a CFS service in a region could potentially allow somebody get somebody to get more testing.

Im concerned also that some of the abnormalities he is attributing to other diseases could actually be a part of the pathophysiology of M.E that is only now coming to light. How do we know that people with M.E dont have these other disorders more commonly as part of thier M.E An example of this is POTS. id i were diagnosed woith POTS or NMH in the U.K they would then say i couldnt have M.E as it is a diagnosis of exclusion.
So much to debate and think about here!
All the best, Justy.

I have got this impression before that he is a bit too quick to say somebody doesn't have M.E. because they have a certain finding - he almost seems to see it as a success: one more to add to the list of missed diagnoses spotted. However, I think there can be problems with this approach e.g. somebody might pick up one or two extra diagnoses, but without an ME or CFS label, somebody might wonder why they should be so disabled. Also, one might take a different approach if one knows somebody has ME or CFS (e.g. if somebody has low bone density, POTS, or whatever, they might be told to exercise a lot but this might be difficult or even counterproductive if the underlying problem is M.E.).

 

[Dolphin]

It is a big problem with a few of the ME/CFS docs. Is it Dr. Cheney that doesn't have much published lately? Apparently he has lots of studies about cardiac problems but they don't get published so cardiologists around the world know nothing about it. I asked a cardiac pathologist, a past co-worker, what he knew about ME/CFS and he said nothing. As far as he knew there were NO cardiac anomalies or problems in ME/CFS patients. All the information that the ME/CFS docs have about cardiac problems has not gotten out into the cardiology domain. The same goes for neurology. I asked a neuro-pathologist what he knew about ME/CFS and again it was nothing. Both these doctors work in a major teaching hospital and are highly respected and tops in their field. I end up looking stupid when I claim that yes there all sorts of things known about this but I can't produce any credible papers from scientific journals that they read and respect.

The fact that both these specialists live and work in Ottawa and must have had dealings with Dr. Hyde at some point make me think that they most likely don't know of/or respect his work.

The frustrating thing is that the Nightingale Research Foundation and BH work side by side. I'm not sure how it works directly but I'm not sure if these days the Nightingale Research Foundation does much/anything "these days" (e.g. last 5-10+ years) that is not BH-related.

It's one of the reasons I like it when I see other research funds say their money will go to published studies/they insist money will only be given out to researchers who publish their findings.

 

[eric_s]

I asked a cardiac pathologist, a past co-worker, what he knew about ME/CFS and he said nothing. As far as he knew there were NO cardiac anomalies or problems in ME/CFS patients. All the information that the ME/CFS docs have about cardiac problems has not gotten out into the cardiology domain. The same goes for neurology. I asked a neuro-pathologist what he knew about ME/CFS and again it was nothing. Both these doctors work in a major teaching hospital and are highly respected and tops in their field. I end up looking stupid when I claim that yes there all sorts of things known about this but I can't produce any credible papers from scientific journals that they read and respect.

That's very interesting and i hope you will find a way to use these connections. There are papers about cardiological and neurological abnormalities of course. I don't know very much about ME/CFS research, but some examples that come to my mind are Hollingsworth's cardiological studies

http://onlinelibrary.wiley.com/doi/...+6+Aug+from+10-12+BST+for+monthly+maintenance

http://www.co-cure.org/Hollingsworth.pdf

or Komaroff's latest EEG spectral coherence study

http://www.biomedcentral.com/1471-2377/11/82/abstract

And i guess there has been a ton more of good research, especially about neurological abnormalities. Are you connected to any organisation? I think it would be great if you or people from an organisation you're with could talk with these doctors and present them a good overview of the research into neurological and cardiological abnormalities in ME/CFS. Probably in the Canadian Consensus Document and maybe also in the ICC one could find references to other important studies. Or hopefully other people could give you more links to articles. I think it's extremely important to get good and respected doctors interested in these things.

 

[justy]

Hi Dolphin - take your point about the Newcastle study and the 405 figure. However we have to remeber that in the U.K the way M.E/CFS is diagnosed is appaling and bascially relies on the patient being ill for years and then finding the diagnosis themselves and then convincing their doctor to look into it. It took me 16 years to get dx of M.E and even then i didnt have ANY specialist testing at all apart from the usual thyroid and liver function tests etc. I think what im trying to say is yes the 40% probably didnt really have CFS but with the system as it is we dont get a positive diagnosis anyway. As Enid has pointed out over and again on these boards even with her provable brain lesions they couldnt say what was wrong with her.
I just feel that more specialist testing to look for missed diagnosis is a good thing, but i also believe it is vitally important that M.E is a positive diagnosis NOT one of exclusion.
Seems a bit weird that Dr Hyde is so proud of finding people to not have M.E -what is he doing for those who do?

Thinking all this over last night i realised that my specialist Dr - Dr Myhill never talks about M.E -she talks about CFS

" The key point to remember about chronic fatigue syndrome is that it is not a diagnosis but a symptom and the name of the game is to identify the underlying causes."

She doesnt treat "M.E" patients as far as i can tell and yet she is widely respected as an M.E/CFS doctor and has published solid research and helped many people.

Im not sure now why i mentioned this but it seemed important. I think there is a belief amongst many M.E docs that real M.E is an exceptionally rare disease that always shows brain abnormalitites (on SPECT scans only and then only if properly read) and that the rest of us have a vaguely similar illness that can be treated with supplements, diet rest etc.

HMMM, ive confused myself now, must go away and think about it some more.
All the best Justy.

 

[Boule de feu]

I think that it would depend on your doctor. My doctor admits he does not know much about this illness and appreciates any information that I give him. I would think that a physician not open to Dr. Hyde's suggestions would be one to stop seeing.
glen

Mine told me that he is 100% sure that what I have is ME...

I asked him: "How many patients like me do you have?."

He said: "1".

So, I repeated: "Another patient of yours is as sick as I am?"

He said: "No. I have one patient and it's you."

Then, I asked: "How many patients with CFS have you seen during your whole practice?"

He said: "2".

I didn't ask if it included me.

So, how can he be so sure that what I have is ME when he has seen two cases only?
I'm worried.

 

[Boule de feu]

It would be good to see his latest - at least ruling out "missed diagnoses" (and treating) would be a great guide for Docs whilst research on Retroviruses comes to agreement. Taking parts of his "The Scientific and Clinical etc" to my Consultant Neurologist was what made him agree on the ME diagnosis - he even said "and they think it's viral" whilst their blood tests revealed nothing.

(Patchy high signal changes in MRI brain scan and weak positive anti smooth muscle antibodies found though - the sort of things amongst many (GI/Glands) he might address or advise on for you and your Doc).

I had your post in mind when I went to see my GP, yesterday. I said to my doctor that what I have is DEFINITELY a viral infection that does not go away. He told me that the viral theory could be true. Then, he talked about the Epstein-Barr virus and how everyone thought it was causing CFS. He also said that there is one disease (I can't remember which one he said, maybe Creutzfeldt-Jakob?) where scientists found that it is caused by a prion. He added: "A few years ago, we did not even know that prions existed. So, yes, it could be something like that."

Why can't they figure out what we have?

 

[Boule de feu]

Hi BDF, i think its a rare doctor who will actually read stuff you give them -if you think your doc falls in this camp then i say go for it.
My (new) GP decided that i hadnt had enough things ruled out and worried i may have been misdiagnosed (im classic CCC and ICC, so i dont think so) to this end i have seen an endocrinologist who is doing CT brian scans, pituitary function etc.
To my mind it would be just as good if we could get our doctors to do tests to rule M.E in such as SPECT scans or some of Klimas's immune markers for example.

Even though im in the U.K i would be very keen to read this booklet and would happily pay postage. Perhaps if wew had a list of people who wanted to read it we could do Canada and the States first before sending it to Europe otherwise its crazy having it criss crossing the Atlantic. Let me know what you think of this idea -but if theres no other takers im keen to read it as soon as possible.
Take care, Justy.x

I asked my doc to investigate the "hormone" route. He agreed (finally!) to have some tests done : progesterone, estrogen, and prolactine. I'm pretty sure that it was never done (at least, in the last 5 years). Too bad that I won't get the pituitary function done.

 

[eric_s]

They are doing it, but they need much more money and many more people working on it, i guess.

Edit: That was a reply to post #46

 

[Boule de feu]

Yes, I think that's what most people would be inclined to think after reading BH stuff. I find it a bit odd that for an M.E. expert, these days he seems to generally not talk about treating M.E.

Maybe he presented different treatments but later during the week-end? I was able to attend Thursday.

 

[Boule de feu]

The link doesn't work (Lulu doesn't seem to have the book), but if i have some time i will try to find it somewhere else. Thanks.

Try this one:
http://www.lulu.com/product/paperba...onic-fatigue-syndrome-second-edition/10255089

There is a comment by Jodi Bassett.

 

[Boule de feu]

Thanks for your message, Gamboa.



I think this is BH's modus operandi - he scares people into going to him. I know somebody who went to him who is unhappy about all this. I would be interested in seeing that booklet and see the basis for the figures. He hasn't published anything on the subject in terms of percentages that that I know of.

Yes, thank you Gamboa. I hope you are still doing ok after all this.

Dolphin -
I have tried to get in. Both times, I was told BH was not available to see new patients or that he was only seeing 30 new patients each year.

After the conference, I called again. They haven't returned my call.

I am worried that I might waste my money on him. My GP is so sure of himself and says that he gave me a "one million $ work-up". There is no way he could have missed anything.

I am also worrying that if I start with BH, will I have to say goodbye to my GP... I'm not sure I would want that.

 

[Boule de feu]

This is intersting. It seems that many people who don't like for CFS to be classified in the same category as Benign Myalgic Encephalomyelitis or who don't like the term ME/CFS or who talk about a "wastebin diagnosis" probably have been inspired by Dr. Hyde.

What is a bit confusing is that what he calls "CFS" is something very different from what other CFS definitions define, becase the definitions i know would exclude you, if you have any other illness that can explain your symptoms. I actually don't see any reason for what he calls "CFS" to exist at all, why even give that a name? It's a mixed bag of simply fatigued people whitout any other symptoms and maybe even without any illness at all and people with all sorts of not yet identified known or unknown other illnesses. This is very different from CFS as defined by other definitions. I think we badly need to weed out that jungle of definitions...

I think i will try to get one or some of his books, if i have some time and feel capable of dealing with so much new information.

I like the idea of finding other, missed diagnoses, of course, but then it's also important what you do with the ones identified as having ME. And it would be great to have an objective measure of the success rate. I'm grateful for people like Dr. Hyde, but i wish ME/CFS would be something where every doctor, all around the world, would know how to diagnose and treat it, and not like it is now, that we have a handful of specialists that often don't even agree with each other and where we have little chance of really knowing how successful they are and if they are right.

In Canada, the problem is that CFS and ME are the same. Nobody gets a diagnosis of ME. It's only Dr. Hyde who differentiates the two. This is why CFS has a very specific definition, here (CCC).

For Hyde and a handful of doctors, the only ME cases are the ones who show on the Brain Spect.

 

[Boule de feu]

I did a Pubmed search and could find only one article about ME/CFS by Dr. Hyde. That does not mean he's not right and i'm only a layman, but i think it's very difficult to believe something if there is nothing published about it other than one person's books.

I would recommend his "encyclopedia" on ME. I read half of it a few years ago but because it is too scientific, my brain could not make sense of everything I was reading. I was also having lots of problems with my short term memory so I had to read and re-read a few times before it would make sense. I had to quit. I'm glad I've got my own copy.

 

[Boule de feu]

This is my last post for now... ;-)
Answer to post 41 - I doubt that doctors will agree to run the tests BH does on every CFS patient since the government complains that we are costing too much already... pffff!

By the way, his office just called... I hope I can get in. On his website, it says that he takes 10 to 20 patients every year. The whole process takes about 18 months but he can usually tell after 6 months what is wrong with a patient.

FROM HIS BOOKLET -

1. B.H. says that ME is a "measurable diffuse vascular encephalopathy" and that it can be demonstrated on testing. All modest to severe ME patients have changes in their brain Spect examination. He explains there are three types.

2. There are several neuropsychological changes that suggest significant abnormality (Dr. Sheila Bastien's research). He describes 14 of them.

3. There are testable major sleep (8 items), vascular (8 items), endocrine dysfunctions (3 items).

4. ME is not depression, hysteria, conversion or somatization disorders (12 arguments against).

-------

This is in the first 20 pages. Too exhausted now to keep going. I'll come back! =-)

 

[Dolphin]

Seems a bit weird that Dr Hyde is so proud of finding people to not have M.E -what is he doing for those who do?

He can be useful for disability cases and the like.

BTW, I agree that having test results that show abnormalities are useful; and similarly if one doesn't have M.E., it would be good for it to be spotted.
However, I haven't seen the evidence for BH's claim that if you don't have an abnormal SPECT scan/similar, you don't have M.E. - to my mind, seeing as we don't appear to have good evidence for that claim, it could mean people are missed and said not to have M.E. without good reason. Having an ME expert say you don't have M.E. could cause people problems.

Loads of testing of any sort (i.e. to help confirm diagnosis or help check for something else) would be good. But somebody has to pay for it; one of my points was simply a pragmatic one that going BH gets so much testing because he works the system but generally this will not be easy to do in a lot of cases. And expecting to go from the low amount of testing currently in the NHS to going to the very high amount of testing BH wants would not be easy to achieve - somebody might be seen as looking for too much.

 

[justy]

I read the link from Eric i think with Dr Hydes Nightingale criteria -they seem pretty stringent to me which is a good thing. I think they are describing the same illness as the M.E described by the new ICC but with the proviso that everything can be proven with investigations. It would be interesting to do a study on Patients using his criteria and see how many of those with a formal M.E diagnosis actually did show these brain and CNS abnormalities. I wonder why more work hasnt been done with this definition and what other M.E docs think about it.

BDF -if i lived where you do i would go for it and try to see Dr Hyde for the full works, if he can find something others have missed that would be great. Of course if you get the M.E diagnosis from him then i would want to know before i went to see him what his treatments are for this.
I also wonder what he would say about those who are mildly affected -he mentions only the most severe to moderate.
Take care, Justy.x

 

[Dolphin]

Yes, I think that's what most people would be inclined to think after reading BH stuff. I find it a bit odd that for an M.E. expert, these days he seems to generally not talk about treating M.E.

Maybe he presented different treatments but later during the week-end? I was able to attend Thursday.

If anyone has heard can help answer this, please jump in. I was going on previous reading and talks I read/saw.

 

[Dolphin]

I am worried that I might waste my money on him. My GP is so sure of himself and says that he gave me a "one million $ work-up". There is no way he could have missed anything.

I don't know your financial situation.
Anyone know his price for Canadian patients these days? Non-Canadian patients?

BH can be useful for disability cases involving insurance companies and other such cases. But if you're looking for treatments for M.E., I'm not sure he's particularly focused on that. So if it's somebody's last bit of money, they need to consider this.

I am also worrying that if I start with BH, will I have to say goodbye to my GP... I'm not sure I would want that.

The person I know who went to him was not happy with some of the things he was saying about them to doctors. IIRC, it was along the lines of the person doesn't have ME/may not have ME, to try to get more testing. And some other stuff they also weren't happy with. I don't know the details in your case but there seems the possibility problems could be caused so it is worth considering and reflecting on.

 

[eric_s]

The person I know who went to him was not happy with some of the things he was saying about them to doctors. IIRC, it was along the lines of the person doesn't have ME/may not have ME, to try to get more testing. And some other stuff they also weren't happy with. I don't know the details in your case but there seems the possibility problems could be caused so it is worth considering and reflecting on.

Wow, yes, you certainly don't want to pay a lot of money to then get this... So it's probably a good idea to first find out where his results will go.

 

[Gamboa]

One of Dr. Hyde's missed cases was apparently a person with Chiari Malformation. There is another interesting thread presently discussing this and a recent video on Youtube . In it the neurosurgeon says that Chiari is grossly under-diagnosed and that it was once considered rare but they now think it affects 1/100 people! The really shocking thing is that the symptoms of Chiari are almost identical to ME/CFS. Check out this website: http://chiarione.org/

"Perhaps the most common misdiagnosis is that of Chronic Fatigue Syndrome. The nature of CMI is to present symptoms for which no cause can be found. For most doctors, CMI is a very puzzling condition. Headache, sore throat, and fatigue are just a few of the symptoms found in both conditions. Most CMI sufferers report having been previously diagnosed with CFS or some other variation of this disease (CFIDS, Fibromyalgia). "


My main symptoms are daily headaches, stiff and sore neck and various forms of fatigue, malaise and lethargy. These are the main symptoms of Chiari. I had an MRI done a few years ago but it was done to rule out MS so I'm not sure if the doctor reading the MRI results was really looking for other things. Also apparently, like ME/CFS, there is controversy about how to read the MRI to diagnose Chiari and a lot of people with it are being missed.