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 the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

IMEA-New M.E. Association

Discussion in 'General ME/CFS News' started by Ana, Mar 7, 2011.

  1. Bob

    Bob

    Messages:
    7,435
    Likes:
    8,577
    England, UK
    I have very little insight into Byron Hyde's SPECT scans, but it seems to me that if they were to be widely used and accepted by the ME patient and scientific communities, then the research would need to be successfully replicated by other scientists. To do this, there would need to be very precise definitions about how the research should be carried out, as it would need to be precisely replicated using the description of the methodology. Does anyone know if Byron's SPECT scan research has been successfully replicated and the studies published?
  2. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    3
    Nothing New about Nightingales ''definition''

    Hi Dolphin


    The body of the document itself actually confirms what I posted previously.

    This is how he introduces it:

    Or another way of saying that is this:


    (a) clinical features married with and assessed against a doctors knowledge of historical medical literature that alerts the physician to the diagnosis

    and

    (b) diagnostic aids/tests to comfirm


    I can understand though, why you might think it is a new definition, but when you read the document you referred to, you note this:

    (i) he acknowledges and refers to all the main medical scientists who were responsible for contributing to the historical med literature and who defined the clinical manifestations of ME as it is currently acknowledged by Hyde himself

    (ii) he also acknowledges the medical scientists who employed the diagnostic tools that assist in the diagnosis.

    From my reading of all the historic literature and other medical research, he has not contributed anything new or novel to this process at all as far as I am aware.

    What I find 'new'though, is - that this paper represents the first clinical codification on ME. It is if you will, the ME equivalent to the CCC CFS definition.

    So that is why he uses the term ''new definition' but it was more appropriate to call it a new codification as there are no new definitions, approaches or departures from the literature that pre dated the paper you refer to, that I can see.

    Codifications often go beyond a summary, and can include comparative material to make points of distinction as well and his document does this.

    I point to the following which confirms such and that he has simply summarised and put all the necessary information into a code.

    He states here:

    .

    Codifications pull existing knowledge together to make life easier for those who have to apply a vast body of knowledge. And so this is why he states the following:

    Anyhow Dolphin, that is the way I have always read that document you referred to by Hyde. I have read it quite a few times, and was interested to learn what was ''new'' in it and poured over looking for such an insight, but came up blank and essentially saw the document in the above light. That is the conclusion I came to, for what its worth.


    Thank you for clarifying the source on the 100% specificity/sensitivity.

    It appears to be a comment. I thought you might be referring to a scientific study. Like you, I would like to see the studies in support. Perhaps it is a reference to Hyde's unpublished findings?

    Even so, other physicians have reported a return of 80% with positive specs. That howeever says nothing about the accuracy of technology, but I would defer to Byron Hyde - who believes they are an appropriately accurate diagnostic tool.
  3. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    3
    Hi Bob,

    They are not only used by Hyde and I think you will find some very influential names in the CFS arena use and endorse them too - because they represent the best evidence of damage of central nervous system dysfunction. If you have ever seen one - they give an immediate and vivid picture of a lack of blood circulation due to vascular damage etc. As stated earlier, they are more commonly employed for use in litigation.

    Studies:

    The only one I have (but am uncertain if there are others - pubmed search?) is this one:

    1. Mena, I Study of Ceberal Perfusion by NeuroSpect in Patients with CFS

    I think this paper was published in 1991.

    Mena is a world leading authority in the field of Nuclear med. That study also refers to others specifically on the technical aspects of SPECTs but unless your a radiologist or a nuclear scientists, I dont think you will get much joy there.

    Will slip across to the other thread.
  4. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    3
    Hi Bob,

    Thanks for clarifying that Bob. I would also hope, that the outcome of your exploration, will not be put forth as such by anyone from PR at a later date either.

    ISO.
  5. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    3
    Hi Angela

    I have to disagree with you there Angela, because although it comes close to ME it falls short and therefore does not define ME as it is outlined in the literature. Also, the CCC definition is essentially a summation of the all the CFS research. Unless I am mistaken, I thought this was one of the motivating factors behind its inception. Which again emphasises that it is, for all intents and purposes, a CFS document.

    I do however acknowledge that it is used for research and is, by far, a much preferable item to use in the field of CFS research.



    Agree with you Angela and that there would be little point in ME patients doing so, because fundamentally they are not interested in using a CFS definition to further ME research.

    What I believe they are interested in however, is using ME as defined in existing medical literature (no matter how old) to select ME cohorts for the purpose of ME research.
  6. Bob

    Bob

    Messages:
    7,435
    Likes:
    8,577
    England, UK
    Many patients believe that using the CCC would be helpful, in a practical sense, for a number of reasons, if used for research for the ME community. One of the reasons is that it is more specific/exclusive than the current official criteria used for CFS in the USA and for CFS/ME in the UK. And so it would mean more homogeneity in research cohorts.

    It could be used as a stepping stone to even even more exclusive/specific diagnostic criteria if that's what patients want.

    So one of the questions that I'm asking on the other thread is if patients are willing to push for a particular political change, if it is a step in the right direction, even if that change isn't perfect.
  7. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
    I have to ask ISO - how exactly does it fall short? The other problem has always been the focus on fatigue- which is found in both ME clinical descriptions (and there's a good few of them) AND 'CFS' 'definitions'. Other symptoms are also in both ME and CFS descriptions (sore throats, for example, swollen glands). I don't think the CC are a 'CFS' as in Wessely-defined 'CFS' meaning 'CF', for example.

    But why? IF CFS is ALWAYS so different to 'pure' ME the the CCC would surely muddy the waters, precisely because they are NOT that different to 'pure' ME' (whatever that is?), if at all?

    That would be GREAT. But who's going to do that? And which criteria are they going to use? There's a good few out there!
  8. Jackofit

    Jackofit

    Messages:
    16
    Likes:
    0
    Canadian is a neurological ME definition,

    I can't keep up with the pace of the posts, ISO what I meant by reclaiming ME is just that, it exists in the WHO at G93.3 and in ICD9-CM at 323.9 and so it can be reclaimed to give us a clear-cut diagnosis that cannot be confused with Reeves CFS or CF. Its unfortunate that so many in the US have not researched the history of the disease ME and understood that CFS was not a new disease discovered in the 80s.

    Bob, my mistake regarding people getting their diagnosis fixed, I should have said they need to push for that diagnosis from DHHS. Patients have to understand there is a legitimate name for the disease that cannot be confused with chronic fatigue, stop playing around with mixed acronyms that keep the two confused, and push DHHS to accept Lenny Jason's operationalized CCC criteria so that they can get a proper diagnosis of ME and remove themselves from CDC's 5 year plan for CBT/GET.

    Angela I know you get it. What I don't get, and I am sure you don't either, is the coalition of groups pushing for the acronyms ME/CFS to be the name of this disease - as if that is going to clear up the confusion when you are going to have to explain what the acronyms mean anyway, then why two different names and how can CFS which is cemented by the CDC as a fatigue state treatable by CBT/GET be compared to an infectious neurological disease that has been documented in the medical literature for 77 years?

    The CCC only used the combined names because most patients in the US were unaware the disease had a proper medical name and history of epidemics that had been usurped by the CDC with CFS.

    ME/CFS is keeping us stuck between two disparate classifications. There is no logic to this position and its an alarming development at a time when we need to settle on the proper name for the disease and get a neurological definition accepted so that everyone can unite under the one name and make it impossible for Reeves and Wessely's CFS to be used against us in the false and negative research that is undermining progress.
  9. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
    At the moment, insisting on the use of ME is a problem for many currently entrenched reasons, on both sides of the Atlantic and likely elsewhere.

    ME is not supported by the 'scientists' or even doctors knowledgable about the illness.

    Many people with most likely neurological disease that fits one of the (too many) definitions of 'ME' are still diagnosed with 'CFS' and treated Wessely/White/Sharpe/ gang 'CFS= CF' style.

    Folklore spread by people such as Michael Sharpe (with help from others) has led doctors into believing ME is just a belief, a term patients like to use because it sounds serious. The "silly, deluded patients" meme abounds. Shepherd won't even use the proper term.

    To make matters even more confusing, some patients who fulfill the various criteria of ME, and of CCS, test positive for Lyme etc.

    So using ME/CFS tends to help people to 'get around' when talking about this illness. Using ME alone at the moment is not useful for many circumstances.

    We are not in a position where any of us should be attacking or refusing to engage with useful initiatives like the CCC, just because CFS is in the title. This is a history of discrepancy and confusion - in DOCTOR'S thinking (nearly all of 'em), and we are all still having to deal with the fall-out from that, let alone try and persuade doctors to sort their own thinking out :(
  10. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    3
    Hi Bob

    Yes in CFS cohorts I agree.

    But that has nothing to do with ME and to suggest for its adoption for the ME community, is with respect, seriously misguided and ill advised and will never be accepted by those who understand the diffferences on the basis of existing fact: the divergent medical definitions which define the respective illnesses.



    What it would be Bob, is a stepping stone to greater confusion. Further, it will not doing anything than simply bury ME once again in CFS. I wont be a party to that I am afraid. Nor wiill those that
    understand the distinctions and issues.




    The simple answer Bob, is no. It would not be helpful for ME at all and with the greatest respect to you and those who are trying to move things forward, please consider reading the historical med literature and other documents and make sure you understand the essential points of difference before you throw yourselfs into calling for or doing anything that INVOLVES ME.

    The damage that has been done to date, is the direct consequence of a mixing terms and a failing on the part of people to appreciate the facts.

    I and other ME advocates who feel as I do, will not accept a CCC CFS definition for ME any more than we would accept a diabetes definition for the illness and we will not accept mis use/application of the term to any other illness criteria be it CFS or anything else and for this reason, we will not tolerate ME being applied to such a definition.

    The simple fact is, that at this juncture we will not ‘’settle’’ for anything. We dont need to. The facts are clear and self evident and speak for themselves. They are perfect as they are, and do not require a step in any direction, only promotion.

    The area of CFS is however, an entirely different matter. But CFS groups cannot apply ME to CFS anymore than they could legitimately apply MS to it.


    ISO
  11. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    3
    Hi Angela


    A good starting point is to look at the medical lit on ME and then compare it to the def on CFS.

    All the med lit on ME acknowledge that the *key feature* of the illness is CNS dysfunction and damage - which is why it is found in Chp 6 of the ICD.

    Contrasted with CFS the defining or key feature and point of distinction is unremitting fatigue of 6 mths and PEM.

    Neither of these matters are key features of ME. The symptom of PEM is present in ME but it is not a defining feature, because as with many illnesses PEM is present in many of them.

    The distinction between ME and CCC CFS may be explored more by reading this: http://www.hfme.org/testingforme.htm (scroll down about 3/4 down page).

    Which criteria are you referring to Angela, there is a body of ME literature which is complementary not contradictory.

    Who is going to do that? All those who understand the distinction and the importance of it being maintained. Those who support orgs like HFME. Those who will be out there working with scientists to educate and lobby them for research with the funding being raised to do so.
  12. Bob

    Bob

    Messages:
    7,435
    Likes:
    8,577
    England, UK
    Thanks for clarifying that, Jackofit...

    In an ideal world, I would personally totally agree with what you say here...

    But in a practical sense, I believe that we have such a long way to go to educate everyone (patients, scientists, researchers, the medical profession and governments), that I personally don't think that we'll get to an ideal situation in one step...

    I think that Angela makes some good points about the practicalities that might stop us successfully getting an immediate name change.

    I would be happy making progress in smaller steps, if it benefited our community.
    (ISO, doesn't agree with my position on this, and I'm going to respond to her/his post later.)
  13. Dolphin

    Dolphin Senior Member

    Messages:
    6,439
    Likes:
    4,665
    Just following up on an earlier conversation:
    I was talking yesterday to the person who saw Byron Hyde and they said "poetic license" is a very good way to describe not just a bit but a lot of what he says.

    I want to see evidence before accepting some of the things he says. Tests are not always as good in practice as they are in theory. And when one is dealing with medical agencies, they tend to expect peer-reviewed evidence.
  14. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    3
    Hi Dolphin

    As for peer reviewed evidence on Spect machines - there would be quite a bit. Spect machines look at the brain and its functions, have been around for a long time and have been accepted as picking up CNS dysfunction quite well (save for when there is a problem with the machine or the way the scan is taken). You even posted evidence of this in the other thread as it related to PWCFS!

    So I really dont understand why you keep going on about wanting scientific peer reviewed evidence about the reliability of a spect scan machine. Really dont understand what your point is I am afraid.

    I dont know what you or ''your friend'' means when they say he takes poetic license to describe a lot of what he says. Is your friend a world renowned ME expert and so, in a position to make that call ? I very much doubt it. For the record, I have also had dealings with Hyde and prior thereto, had done extensive research and study on ME. I am not an expert - far from it, but I think I had sufficient knowledge to assess him and I can report that from my own experience it was quite the opposite.

    You reported earlier that your friend was disappointed with their spect result. Did it show up CNS damage? Did Hyde confirm a diagnosis of ME, or are you unable to say?
  15. Dolphin

    Dolphin Senior Member

    Messages:
    6,439
    Likes:
    4,665
    20% of the healthy controls had abnormalities. Hardly makes that test particularly good.
    Perhaps there is a different threshold that is better.

    I will have to contact my contact to see what they are happy for me to say. But just to repeat - it wasn't me - I'm not mobile enough to go to Canada.
  16. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    3
    Hi Dolphin


    We have addressed this on the other thread. People interested can go across and read it there.
  17. Dolphin

    Dolphin Senior Member

    Messages:
    6,439
    Likes:
    4,665
    Where was the issue of 20% of controls being positive addressed? Maybe you could direct me also to what you are referring to.
  18. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
    But your reference here is from Hummingbird- who supports Hyde. His definition is really different to the various other 'ME' definitions and case descriptions. In fact, it could be argued CC ME/CFS selects patients more likely to be tested positively by Hyde's work-up than say, Ramsay and especially the 'London' criteria!

    IF Nightingale could be published, or if Hyde could publish research using Nightingale criteria, that definition would be a lot more safe in terms of being accepted by the so-called 'scientific community'. I'm not against 'Nightingale', but it is useless for people who cannot afford to go to Hyde for a work-up, and for ME patients (or Lymies, for that matter) generally, if it is not being peer-reviewed and tested in full view of the 'scientific community' (I'm aware of the irony in various ways!)

    As it is- it appears you are saying CC are inadequate because they rely on symptoms set and are therefore 'CFS'. But so do most of the other 'ME' definitions! The overlap in symptoms between some ME descriptions and 'CFS' constructs are part of the problem.


    This is slightly circular as an argument. I actually asked you- because I think we need clarity here as to which 'ME' criteria we are talking about. And unfortunately there are some contradictions and instabilities in the various descriptions of ME.


    But you can't name anyone? You don't know of any scientists willing to undertake research using an 'ME' case description I take it? There are few even willing to take on the CC!

    I am actually one of those people trying to educate scientists (a lot of us are), but the scientists aren't always listening- that's to do with the sociology of science probably, but we do have a situation where 'scientists' cannot get their heads around stuff which a first year student nurse could grasp (hence MY personal frsutration).

    If you are someone pushing for use of the Nightingale (you sound like this now)- that's not a problem, but you should understand the problems of Hyde NOT publishing in peer review his work and how this means Nightingale is currently a 'phantom' in the whole ME (and CFS as a synonym) field.
  19. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    3
    Hi Angela,

    1. From my reading of the various historical literature, I do not see Nightingale as contradicting ME as described in historic literature. In fact, I do not see Nightingale as a ''definition'' but a codification of the essential elements of the historical literature. I could be wrong and perhaps you would like to point this out. How is his definition different to the other descriptions of ME in your POV? I am genuinely interested.


    2. I dont think people are required to go to Hyde for a work up. The "'definition document'' is a codification (please see my previous post to Dolphin in this thread). That document makes it quite clear that it was constructed for the same sort of purpose CCC CFS was: to draw together the literature to assist in a clinical setting. Hyde also wants other physicians to understand this area, and to be able to recognise ME.

    3. I am not specifically focusing on symptoms as much as I am looking at key criteria, which distinguishes one illness from another - in the way that physicans and doctors do in clinical practice and researchers do when defining research definitions.

    I acknowledge that CCC CFS does make reference to immunological and neurological symptoms, but the over riding emphasis or the key criteria which is the key recognised by the definitions and the ICDs too - is: a. unremitting fatigue for a specific period (with PEM)

    The second factors is that all CFS definitions define a syndrome and are diagnosis of exclusion.

    You have to exclude all other illnesses before you arrive at CFS. ME is not a syndrome and therefore does not require this approach - another point of distinction with respect to application of key characteristics/approaches and classifications used by doctors and researchers to make distinctions between illnesses.

    There are many illnesses Angela, that share common symptoms - but there are always key features - which result in points of departure and enable accurate diagnosis/research and outcomes.

    I think this is why, most people fail to appreciate the distinctions - because they see a lot of similarities in symptoms. Similarities yes, but they are not the same and they fail to appreciate how medicine defines and applies distinctions/ distinguishes between illnesses.

    This is what I know. You find scientists who are knowledgable and work in the associated area. You dont have to educate them too much. That is not the problem I have personally found. The stumbling block is money.

    In so far as naming scientists and what I or others might be discussing - I would not disclose that, and especially not online.

    I am not pushing for Nightingale definition - but I will say - as a codification of what appears to me - to be the essential matters of the historic literature, it is a very good aid - and good place to start.

    ISO
  20. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
    ISO

    I just don't have the time to actually, here now, show all the differences between the various definitions of ME- there's too many of them. It would take me too long What I would suggest is people actually look themselves in the various definitions. And I will try and get some links to SOME of those (I did this before).

    I do agree that the 'diagnosis by exclusion' is one of the most fallacious facets of CFS case definitions. the CC actually basically only say 'look for some diagnoses it would be a shame to miss' though. Leonard Jason's tweaked research version of the CC are even LESS of a problem in this respect, if you read them closely.

    Meanwhile- other ME criteria like the London are exclusionary for other conditions. The problem with saying 'ME' is DEFINATELY UNLIKE and COMPLETELY DISTINGUISHABLE from other conditions is that this is untenable. We see that untreated Lyme sufferers share most of the symptoms of ME (not just CFS). THAT may be a major stumbling block with claiming ME is completely different to and apart from all other diseases. That cannot be demonstrated at present. Hyde hasn't demonstrated this.

    We may be searching for a holy grail of ME as a unique condition - and in the process, because that is unsafe, damning people to the other fallacious extreme currently doing the rounds: "ME is a belief system that patients have that doesn't exist. But unexplained illness which is actually all in the mind does"!

    Sadly - because no scientists are willing to put themselves on the line and say- openly and honestly - we are working on establishing a contemporary model of diagnosis of disease known as Myalgic Encephalomyelitis, I and others can only take it that there are none.

    This may be a problem of elitism- which is very common in this field, people thinking they are above the public fora: in which case why bother to discuss on this forum? You are basically asking me to accept on trust- without a jot of substantiating evidence- that there are scientists working on Myalgic Encephalomyelitis. But we don't even know who you are!

    Again re Nightingale - patients and carers are not in a position to support Nightingale- because our credibility, which is always under deliberate attack, will be untenable with an unpublished, un-peer-reviewed, untested definition. What we can do is educate the scientists and public as to the untenability of the CFS case definitions (not that we're listened to much).

See more popular forum discussions.

Share This Page