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IACFS: Dr. Byron's Hyde booklet on ME

Discussion in 'General ME/CFS News' started by Boule de feu, Sep 25, 2011.

  1. Dolphin

    Dolphin Senior Member

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    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 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.

    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.).
     
  2. Dolphin

    Dolphin Senior Member

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    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.
     
  3. eric_s

    eric_s Senior Member

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    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.
     
  4. justy

    justy Senior Member

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    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.
     
  5. Boule de feu

    Boule de feu Senior Member

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    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.
     
  6. Boule de feu

    Boule de feu Senior Member

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    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?
     
  7. Boule de feu

    Boule de feu Senior Member

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    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.
     
  8. eric_s

    eric_s Senior Member

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    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
     
  9. Boule de feu

    Boule de feu Senior Member

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

    Boule de feu Senior Member

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  11. Boule de feu

    Boule de feu Senior Member

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    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.
     
  12. Boule de feu

    Boule de feu Senior Member

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    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.
     
  13. Boule de feu

    Boule de feu Senior Member

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    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.
     
  14. Boule de feu

    Boule de feu Senior Member

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    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! =-)
     
  15. Dolphin

    Dolphin Senior Member

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    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.
     
  16. justy

    justy Senior Member

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    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
     
  17. Dolphin

    Dolphin Senior Member

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

    Dolphin Senior Member

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    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.

    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.
     
  19. eric_s

    eric_s Senior Member

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    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.
     
  20. Gamboa

    Gamboa Senior Member

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    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.
     

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