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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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A Dozen Different Diseases? Stephen Holgate Calls for Radical Change in ME/CFS Research

Discussion in 'Phoenix Rising Articles' started by Mark, Aug 15, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

    View the Post on the Blog
     
  2. Sasha

    Sasha Fine, thank you

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    Great article, Simon. This is a very positive development. I bet we'd all like to be one of the 5,000 volunteers!

    Has there not recently been a CAA-funded study that attempted to define groups of patients by clusters of symptoms? I can't remember the data source or the number of patients involved.

    I like Prof. Holgate's strong push towards biomedical research and his wish (and the CMRC Executive's) to involve patients in setting the research agenda. These are all very positive signals.

    If anyone is reading the article on the home page, you may overlook (as I did) the sidebar giving an interesting bio of Prof. Holgate - if you missed it, have a look. It makes it very clear we're extremely lucky to have him.

    Thanks again, Simon.
     
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  3. Nielk

    Nielk

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    Thank you Simon for the hard work writing this article. I am impressed with Dr. Holgate's willingness to tackle this complex disease. I like the large scope and scale of the suggested study. It seems true that the latest findings and thoughts about ME/CFS point to the fact that it might not all be one disease. I am just a bit confused. You mention the example that he mentioned about breast cancer showing many causative agents, yet breast cancer is just one disease. Could it be that ME/CFS likewise is just one disease state resulting for different causes and/or pathogens?
     
  4. Kina

    Kina Moderation Team Lead

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    Excellent article Simon. :)
     
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  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Simon

    Very interesting! I guess at this point how those 5000 would be chosen and participate would be just speculation. Though it would seem that they would have to be located in the UK, for logistical reasons.

    Thanks so much for writing this up.

    Sushi
     
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  6. Simon

    Simon

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    Thanks, Sasha!

    And yes, I agree that we are very lucky to have Stephen Holgate. Like Ian Lipkin, he has an abundance of other good opportunities and to have such able people taken a leading role in ME/CFS bodes very well for the future.

    And there is a CDC study underway that has a similar aim, the multi-clinic study with around 500 patients. To date, this has a greater emphasis on clinical data but is a similar idea (also, it is already funded, unlike the current plan which is at an earlier stage - though I would never bet against Stephen Holgate getting what he wants).

    This is where it gets complicated! Breast cancer refers to tumours in the breast, and what Stephen was saying is that there are 14 known, separate causal pathways that lead to breast cancer. So whether it would be breast cancer or breast cancers, I'm not quite sure. I think the choice of treatment depends on the precise type of breast cancer (eg particular mutations/causal pathways) so this is more than splitting hairs. The more we know, the more complicated things get.

    With ME/CFS, what Stephen is saying is that there are probably many different causal molecular pathways, but some of these will be related. He said several of the molecular pathways could be part of the same disease mechanism, or 'causal network'. You could see each of these causal networks, or disease mechanisms, as one Disease, with ME/CFS then being made up of multiple diseases.

    You might picture it like this:
    cluster1.png

    But he is saying ME/CFS is more than one disease.

    Another way to look at it is to roll back a couple of decades to when thyroid and adrenal problems leading to fatigue were often misdiagnosed as ME/CFS (still are, occasionally). These problems were not the same disease as ME/CFS, even though they can 'look' very similar. There could be several other such diseases that lurk under the current ME/CFS banner, completely unrelated to one another in causal or mechanistic terms, but appearing to be similar on the surface.

    Hope I haven't gone on too much there.

    And glad you liked the article.
     
  7. Sasha

    Sasha Fine, thank you

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    The results of the study I'm thinking of were presented at the FDA workshop earlier this year, I think - just can't remember much more about it. o_O
     
  8. Nielk

    Nielk

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    Sasha - are you thinking of Susan Vernon's presentation at the FDA regarding the study being conducted with Biovista?
     
  9. Simon

    Simon

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    That's the same one - I wrote that blog from the FDA video of Elizabeth Unger's presentation.
     
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  10. Sasha

    Sasha Fine, thank you

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    I think that was about treatments but the study I vaguely remember was about clustering patients according to symptoms (which I suppose could have been a prelude analysis to identifying treatments)... :confused:
     
  11. alex3619

    alex3619 Senior Member

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    I have been saying for years that ME may be two or more different diseases, and CFS may be many different diseases. That is the way the evidence stacks up. It still requires more evidence to be sure though. Holgate is right about a lot of it in my opinion, including the need to focus on molecular mechanisms, but that could just be my bias as a biochemist coming out. There is a problem with that assumption though. Even with, for example, fifteen mechanisms identified, we still have to interpret those within the complex seething molecular cauldron that is the human body. A molecular mechanisms reductionist claim, and its not wrong, may be useful but to really interpret it you have to look at the big picture too. Fortunately for us the rise of systems biology may give us the tools to do that.

    I also think that if there are fifteen underlying causal mechanisms, again to use that example, there will be common pathophysiological consequences. Indeed one big issue in our research that I have written about before is much of what we know may be pathophysiology and not tell us much about causation. It does tell us a lot about symptoms however.

    Treatment for symptoms only requires an understanding of pathophysiology. A cure is best developed by understanding ultimate causation. Advances in both directions are beneficial, but to have a good cure (as opposed to a very problematic one) requires that we understand a broad diversity of molecular interaction in ME. However even a bad cure is better than no cure. I suspect Rituximab will turn out to be a bad cure, and an OK treatment. If we understood the mechanisms better then we could optimize such treatments better.
     
  12. xchocoholic

    xchocoholic Senior Member

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    Hopefully they will eliminate all the "pwcs" with known causes first. I'm just talking
    about the ones who completely heal via treating their known cause.

    So far we know
    about celiacs, lymies, moldies, potsies, and those with thyroid and adrenal
    problems. I feel like I've forgotten a known misdiagnosis.

    Of course they'll be some pwcs with all the above who still qualify as pwcs.

    Great news ! I hope this entices others who like a challenge.

    tc ... x
     
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  13. Erik Johnson

    Erik Johnson Senior Member

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    Can't eliminate the Moldies.

    Biotoxin exposure is part of what started the CFS syndrome.

    Doctors just didn't know it.. because they never acted in accordance with the basic purpose of creating a syndrome:

    To look for the unknown factors.
     
  14. taniaaust1

    taniaaust1

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    In response to Erik Johnsons post.. I dont see how it could take anything away from ME clusters outbreak group as it would help to define that group as being its own depending on what they find separates all the groups.

    Maybe some of the ME outbreaks too have been different things and not even exactly the same? Who knows (some of the outbreaks have been described quite differently but of cause that may also be due to the speciality fields or interests of whoever was studying it and reported at the time, different things will stand out to different people).

    Nielk.. There are different kinds of breast cancer. My grandma was very unfortunate she got breast cancer which they thought was successfully treated but then developed a completely different kind of breast cancer (an extremely aggressive rapid growing kind) which killed her

    ............................

    Thanks for this article, it helps give me hope that this illness may be figured out my lifetime. We so need good scientists like this one in the field, helping move things forward for us.

    This scientists thoughts are on par to what Ive always believed, that there are many different illnesses involved (the ME outbreak group being one or maybe even that group may be two or three different things). I believe quite a few new illnesses will be found.

    I think within our group, they are quite likely to discover also new atypical presentations of well known illnesses too, which will form new views around those illnesses as well. Maybe some of the diagnostic criteria for some other illnesses are needing some tweeking as may be missing some with those illnesses due to how illnesses are defined, not always being great. I believe new subgroups of other well known things will be found.
     
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  15. Erik Johnson

    Erik Johnson Senior Member

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    That would be redefining ME as whatever five thousand putative ME diagnoses have, instead of what the Royal Free survivors had.
    And taking CFS away from the evidence and illness that started it. Substituting a new dataset.

    Then combining two mistakes in one, calling it ME/CFS and compounding the error.

    Whatever you came up with, you'd have to inform Dr Peterson's original CFS cohort that they don't have their own syndrome, but are some kind of peripheral subset, and probably not even CFS at all.

    Oh, we've seen that trick before, haven't we?
    But it was the CDC that pulled it last time.
     
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  16. taniaaust1

    taniaaust1

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    How would you explain myself fitting the ME international consensus criteria (my illness started out as a virus just like ME does, my illness is just like what Cheney and David Bell talks about with their patients) and my sister who developed what fits as CFS from accidently drinking from my glass? She hasnt got none of the ME abnormalities I do showing on her her test results and she doesnt met the ME international criteria (she's now been sick for 2 years, she does get post exertional symptoms). How can I not think she hasnt got what I do esp seeing she seems to have caught her illness from me. (I have 2 others in my family sick too, one of the others does meet the ME criteria while the other also doesnt)

    No matter what we do, due to not enough being know about ME, the whole thing is ONE HUGE MESS with us trying to draw a line between the illness but no one really knowing where the lines lay so it all comes down to some chance what defination you are going to fit under. Maybe there are others like my sis who may have ME but dont currently fit the current definition (note I do like the ME definition so my post isnt certainly one against it..but it is probably missing some with ME.. either that or I wrongly fit it myself).

    I think anyway no matter which views we have, we all agree its a huge mess. Till they find the ME virus? or whatever, it will continue being a huge mess.
     
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  17. Erik Johnson

    Erik Johnson Senior Member

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    Only an academic mind would see fit to make a puzzle easier to solve by shaking fifteen of them together and trying to solve them all simultaneously.

    ME is first and foremost, everything that was known about the Royal Free cohort.

    CFS is the term for the illness and evidence under scrutiny by the Holmes committee, when they felt compelled by the weight of that evidence to contrive a syndrome in order to study it.
    (Yes, even the stuff in Osler's Web that they... strangely saw fit to leave out of the definition.)

    Deviation from those parameters must be carefully considered for inclusion.
    Not because they might be less severe, but to avoid complicating the problem.

    I'd stick with the basics. But that's just simple-minded me.
     
  18. Bob

    Bob

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    I see Erik's point...
    It would be silly to ignore geographical outbreaks when investigating ME/CFS.
    But Peterson has provided his samples to Lipkin (and to Beth Unger, and I assume his own Simmaron research projects), so his patient cohort is being investigated.
    I don't know how many outbreaks we've had in the UK (memory fails me) but I think they are very unlikely to get investigated, because I don't think the patients have been closely followed by any current doctors or scientists. I might be wrong.
    In any case, most people with CFS/ME are not from outbreak areas, so they also need to be investigated, and subgrouped.
    I think the proposals are a promising and necessary step forwards for CFS/ME research.
    Like Tania, it gives me reason to be optimistic.
    Especially because I think Stephen Holgate is very capable, with the best motivations.
     
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  19. Erik Johnson

    Erik Johnson Senior Member

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    The point of creating a new paradigm called "Benign Myalgic Encephalomyelitis" in response to the Royal Free outbreak was that the authors felt they were on strong enough ground to delineate a discrete illness entity.

    This was a step up from "Iceland Disease" and "Epidemic Neuromyasthenia"
    But ONLY if you consider to ME to be the evidence that constituted the REASONS the authors were on strong ground.
    To set these aside and think of ME as "everything in general", is moving ME below the standards which gave the entity a strong enough footing to qualify as a discrete entity.
    -----------------------------------------


    http://findacureclub.weebly.com/uploads/5/2/5/1/5251327/acheson_amjmed.pdf

    The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis,
    Iceland Disease and Epidemic Neuromyasthenia
    E.D. Acheson, D.M., M.R.C.P.

    The Case for a Clinical Entity
    It is significant that the first review of the
    syndrome under discussion was entitled, “Not
    poliomyelitis”45; the second, “A new clinical
    entity?”22. In later articles entitled, “Epidemic
    myalgic encephalomyelitis”46, “Benign
    myalgic encephalomyelitis”46a and “Epidemic
    neuromyasthenia”15,16, the authors considered
    themselves on sufficiently strong ground to
    describe and name the syndrome. This
    sequence indicates that the first and minimum
    requirement in the definition of an entity is the
    essentially negative one of showing that the
    syndrome is not an unusual manifestation of a
    disease already recognized. Later, as evidence
    accumulates, it may be possible to define the
    disorder in positive terms.
     
  20. Erik Johnson

    Erik Johnson Senior Member

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    This is exactly what happened with "CFS"

    By finding new evidence, Cheney and Peterson moved the "CEBV Syndrome" entity up to a level that the CDC couldn't ignore. (The CDC just didn't TELL you about all that evidence. Nice trick, eh?)

    It is easy to bypass the CDC contrived confusion by conceiving of CFS as.. "The illness AND EVIDENCE under scrutiny by the Holmes committee"

    In this way, we have two discrete databases, for easy analysis.

    One called ME, and one called CFS.

    So we can see where they overlap.
     

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