1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
Discuss the article on the Forums.

IACFS: Dr. Byron's Hyde booklet on ME

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

  1. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    I have now looked at this file a bit http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf.

    I think it would be helpful if he could give more details about the missed illnesses that CFS patients usually have. What illnesses are these concretely? Only if he says this do doctors have a chance to diagnose people correctly.

    Also i think his proposed CFS definition doesn't make too much sense (with all due respect), because if he says CFS is being fatigued (gradual onset) and is often due to a missed major illness, then why give all these people with a missed diagnosis the label "CFS"? Fukuda, for example, would exclude all these cases where there is another illness that causes the symptoms and that seems to make more sense to me. Why give a missed diagnosis another name ("CFS")?

    If he is able to find a major illness, other than ME, in so many cases, he should share that with the world, so that every doctor can correctly diagnose these people and they can be separated from the ME/CFS cohort. Maybe he does that in one of his books.
  2. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    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.
  3. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    56
    Ottawa, Canada
    The link seems to work for me.
  4. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    56
    Ottawa, Canada
    I've heard he takes over a year with each patient...
    I must leave now, but I will write the title of each section when I come back.
    This way we will be able to discuss them.
  5. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    The link takes me to a search page where it says "0 results". But i'm sure i can find the book elsewhere, so don't worry.

    It would be very interesting to have reliable, independent numbers about how successful these doctors, like Dr. Hyde, Dr. Cheney, etc. are.
  6. Gamboa

    Gamboa Senior Member

    Messages:
    193
    Likes:
    152
    Canada
    Hi all,

    Just want to clarify something. There were 2 booklets provided at the conference. One was free and entitled " The Nightingale Research Foundation Definition of ME" and one cost $20 entitled " Missed Diagnoses; ME and CFS". The giant textbook written by Dr. Hyde in 1992 was also available and was free of charge.

    I bought the Missed Diagnoses booklet. It is dated 2010 so is quite up-to-date. In it Dr. Hyde re-affirms his belief that there are 2 different illness: ME and CFS and that what is labeled as CFS is really a missed diagnosis. He states on pg 24 that he is able to identify " underlying disease pathology in 70% to 80% of the patients " he examined. The 20% to 30% that he can't find ME or another illness he says is due to his own "deficiencies as a physician and/or the deficiencies of the available technologies."

    He states on pg 29 that he places "acute onset patients in the ME category and the gradual onset in the CFS category". It is this CFS group that he feels has , for the most part, been misdiagnoses and that they have some occult disease that has not been identified because the doctors they have seen have done minimal testing and then told the patients that they have CFS. Even if the patient had an initial good workup he also believes that they should be re-evaluated after a period of time since new things could show up. On pg 62 he states that CFS is not a disease. "It is a patchwork of symptoms that could mean anything"

    He then lists and talks about what testing should be done and in what order. Obviously don't go for the expensive and elaborate stuff first.

    The next section is the definition of ME. It looks like it is the same as in the free booklet.

    The last section is about mental health problems in ME and Fibromyalgia. It is in this section that he lists all the missed pathologies that he has found in supposed ME/CFS patients that he has seen. He states that 100% had missed measurable brain dysfunction, 98% sleep dysfunction, 74% thyroid dysfunction, 47% arthritic, rheumatoid changes misdiagnosed as fibro., 47% had missed major disease including cardiac disease, malignant disease, vascular injuries and autonomic nervous system dysfunction. He also mentions that in his patients 47% had a missed major illness!! This included a case of tertiary syphilis and hep B, 4 patients with significant heart disease, a patient with pulmonary valve disease and respiratory dysfunction, 3 missed diabetics, a missed Ehlers-Danlos syndrome and numerous rheumatoid and spinal anomalies. This all sounds quite alarming and my initial feeling is that I need to be seen by a doctor ASAP and be re-tested for all these things! At least here in Canada, I have had a good workup but it seems that in the US and elsewhere the patients have gotten very little testing prior to being labeled with CFS. How docs can be missing some of these things is scary.

    The bottom line for me: after attending the conference for 4 days I feel I really need to pursue getting a fMRI or spect done ,exercise testing using the correct method (not what I previously had done) and cardiac work-up. These things seem to be the best way to show objective abnormalities at the moment. I going to try and see Dr. Hyde as a patient and hopefully he can get these things done.
  7. Dolphin

    Dolphin Senior Member

    Messages:
    6,404
    Likes:
    4,536
    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.
  8. Gamboa

    Gamboa Senior Member

    Messages:
    193
    Likes:
    152
    Canada
    It's me again,

    Just wanted to add that Dr.Hyde had a poster presentation entitled "Thyroid Malignancy Associated with Severe Cognitive Dysfunction, Cortical and Subcortical NeuroSpect Changes in Patients Presenting with a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) ". What a mouthful!

    The bottom line: he is finding thyroid malignancy in ME/CFS patients that exceeds the normal incidence. He has also found a "significant higher rate of development of all thyroid disease in this same group of ME/CFS patients". He recommends that all ME/CFS patients should be examined by thyroid ultrasound for evidence of pathology and malignancy. Having blood work for TSH, FT3 and FT4 is not enough.

    I guess I'll be requesting this test also.
  9. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    837
    UK
    Many thanks Gamboa for your interesting info - I certainly know about minimal tests though ME certain in my case - encephalo part of it all. I hope you will be able to see Dr Hyde.
  10. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    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... :rolleyes:

    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.
  11. Gamboa

    Gamboa Senior Member

    Messages:
    193
    Likes:
    152
    Canada
    I agree Dolphin. I live in Ottawa and the over-all feeling I get from other people and doctors is that he is a bit extreme. I used to work in the Microbiology Lab at the Ottawa Hospital and we would get some crazy requests from him. Mind you, the ID docs didn't believe in CFS at the time so I think they pegged him, unfairly, as being a bit odd, to put it politely.

    I think , like many people, he has some good ideas and some bad ideas. Since I live in Ottawa and most of the testing is covered by OHIP I think I will give him a shot. I'll let you all know how it goes (sometime next year I imagine).
  12. Dolphin

    Dolphin Senior Member

    Messages:
    6,404
    Likes:
    4,536
    Thanks Gamboa. Best of luck.
  13. Dolphin

    Dolphin Senior Member

    Messages:
    6,404
    Likes:
    4,536
    Yes. And believe his claims that SPECT scan/similar can find ME in 100% of cases, which I'm not sure about.
  14. Gamboa

    Gamboa Senior Member

    Messages:
    193
    Likes:
    152
    Canada
    I agree. I don't like this entire definition debate and all the arguments surrounding which definition is right etc. There seemed to be a lot of discussion about this at the conference but I'm not sure what will be done about it. The other docs and scientists don't appear to agree with Dr. Hyde about his definition of ME and its distinction from CFS.

    I am hopeful however that by the next IACFS/ME we will no longer be debating definitions but will have multiple biomarkers to identify this disease. I felt that we are close to having some really good studies being performed over the next few years.
  15. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    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.
    Dolphin likes this.
  16. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    That would be great (biomarkers). I'm not a pessimistic person, but i think there's always a sense "we're alomst there", so i think we should not blindly trust this and just wait. I believe we should do what we can so that in our countries everybody will use the ICC. And those who don't fit these criteria could maybe still be diagnosed as having Fukuda CFS or then idiopatic chronic fatigue, which should not automatically be seen as something pychological.
  17. Dolphin

    Dolphin Senior Member

    Messages:
    6,404
    Likes:
    4,536
  18. Dolphin

    Dolphin Senior Member

    Messages:
    6,404
    Likes:
    4,536
    I'm not sure how easy it is to do but I think a distinction would ideally be made between somebody who looks like an ME/CFS case for a few years or whatever, and BH found a missed diagnosis, and somebody who was initially sent to him and a missed diagnosis was found. Some exclusionary conditions often aren't that similar to ME/CFS.
  19. justy

    justy Senior Member

    Messages:
    2,287
    Likes:
    1,801
    U.K
    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

    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.

    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.

    BTW i havent had time to read the Nightingale definition yet before posting.
  20. Gamboa

    Gamboa Senior Member

    Messages:
    193
    Likes:
    152
    Canada
    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.

See more popular forum discussions.

Share This Page