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Jason et al propose four ME/CFS groupings

Discussion in 'Latest ME/CFS Research' started by MeSci, Jan 19, 2016.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I was surprised not to find this already posted (maybe it has been but I failed to find it!).
    http://www.tandfonline.com/doi/full/10.1080/21641846.2015.1124520
     
  2. halcyon

    halcyon Senior Member

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    I really hope other researchers are paying attention to this and Jason's other stuff. This directly effects their patient selection and the outcome of all research on this disease (or diseases.)
     
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  3. Sean

    Sean Senior Member

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    Interesting that Ramsay's criteria are the most restrictive. Not sure what it implies, but interesting.
     
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  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    I thought at first that perhaps he was going to talk about PWME and various symptom groupings such as predominantly gastrointestinal symptom presentation, predominantly neuro etc.

    I'm not a fan of including people with only fatigue as any sort of group. Not to say they don't deserve consideration in terms of treatment and diagnosis from their Dr but not as part of this group.

    Any sub typing needs to address the fact that so many people with ME present with other related health issues. Particularly OI.
    We have no agreement on what is essentially just ME (if there is such a thing) as opposed to ME with OI, fibro, IBS, thyroid, migraine etc
    all of which are issues in their own right.

    I would tend to favour a sub typing that considers severity and length of disability (not as a replacement for other sub typing but as an alternative to work from that recognises other ways of sub typing).

    Not having read beyond the abstract perhaps I may be off base with my remarks.
     
    Last edited: Jan 20, 2016
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  5. halcyon

    halcyon Senior Member

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    OI is listed in the Ramsay criteria. It looks like they included it in the way they operationalized "Ramsay ME" for this paper:

     
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  6. taniaaust1

    taniaaust1

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    sorry but I think that is ridiculous that should even be put into a ME/CFS category at all.. that is simply what is known as "chronic fatigue" .. just a symptom of an illness.
     
  7. EtherSpin

    EtherSpin Senior Member

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    yes, the 6 months of fatigue group also should not have the word syndrome tacked onto them. great opportunity to stop using Chronic fatigue separately to CFS (emphasis on the S) - there are enough functional synonyms for chronic and enough for fatigue
     
  8. Chrisb

    Chrisb Senior Member

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    "To meet ME sudden onset criteria, patients needed to indicate a sudden onset and that their illness developed either within 24 hours or over 1 week".

    I think there is a clear problem with this. In my case symptoms developed over something like three and a half weeks. I had no idea what was wrong. I then developed obvious signs of acute viral illness and it became clear that the onset of symptoms represented the prodromal stage of that illness. It would be perverse to exclude viral illnesses with an incubation period of greater than one week. Or am I misunderstanding this.
     
  9. halcyon

    halcyon Senior Member

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    If they intend this for use as research criteria then I see no problem with it. Best to be as specific and rigid as possible there. Clinically, I'm sure things aren't always so clear in every case. This time period does fit the noted incubation time of 3-5 days seen in outbreaks though.

    I too had the viral symptoms of the prodromal illness manifest over the course of several weeks, but the onset of the ME symptoms was instant. I can tell you the exact day, hour, and almost minute that it happened. It was like flipping a switch.
     
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  10. funkyqueen

    funkyqueen Senior Member

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    Here is how I see it: I have no pretend to assert that there are x or y groups / subgroups of patients, but I'd like to expose you my feelings, and have yours opinions:

    Certainly, there are several categories of patients diagnosed (wrongly or rightly, it depends), as ME patients:

    --- Differentials diagnosis:
    * Cancers,
    * SED
    * Depressive
    (I do not want to speak ill on them, they are patients who did not choose to be sick, but, damn, in this sadly and shameful still actual climate of psychiatrization of our disease, in the dark of current diagnostic criteria on ME - in spite of the various existing concensus, they make us much hurt ...)
    *( maybe ? ) GWI? ( not sure if GWI is or not ME ( triggered by immunizations form)
    * All other differential diagnosis sometimes confused with ME (MS, etc)



    --- Patients suffering from chronic post-Lyme encephalomyelitis



    --- MEers ( the - insulting at the extrem - term of CFS did not exist for me, and being only one created term to designate a "trash diagnostis")


    After that, it gets complicated (again):
    As in all neurodegenerative diseases, there are different degrees of achievement
    (i.e: MS, ALS, Alzheimer's, etc ...) ...
    So ... from the less severe to the most severely affected.
    Drs Ramsay and Hyde, believe that the most severe are those with cardio vascular achievement, the famous 25% group (of which I have the misfortune to be part of)

    Then, come the theory of the subsgroups of " +/ - 3 years" ( =the immune system of a PWME would be, the 3 firsts years, in constant inflammation / constant-over activation non-stop and,( in severe MEers, at least), and then through being over-activated, the immune system would return to a form of immune deficiency (theory proves in my case, proves to a lot of others PWMEers that I have read, and suspected firstly by Lipkin, if i remember well)

    Here's how I see things ... what do you think?

    (Ps: I would like also to mention a few things that I read often, here or in FB's patients groups: some pwMEers, when they talk about their diagnosis, use to write :

    "Fibro + ME + POTS " or "ME + Fibro+ pots +OI".

    In my thoughts, it is not correct to write this, because I believe that ALL PWMEers have (at different levels) automatically also the sames pains viewed in Fibromyalgia - and others of course, since, as a severe MEer, I have all the pains (= neuro, vascular, muscular, bones, tendinous, etc.)
    As they are writing ("in addition to ME"): POTS and / or OI, I think it comes with the "ME-pack"
     
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  11. Chrisb

    Chrisb Senior Member

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    My problem is that the viral illness morphed seamlessly into a relapsing, remitting illness in which, as you describe, each relapse was like flipping a switch. I would be surprised to find myself excluded from the Ramsay ME group on the basis of these proposed criteria.
     
  12. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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  13. Chrisb

    Chrisb Senior Member

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    Sorry I misread this (I often do). It seems counterintuitive to define as sudden onset symptoms which develop over the longer periods mentioned. The answer to your question should prove interesting.
     
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  14. halcyon

    halcyon Senior Member

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    Again I agree. Clinically this seems needlessly stringent. Hyde has spoken of ME cases that took up to a month to develop, but he still seems to consider those cases true ME.

    For research though, by all means, be stringent as hell. Take only the people that had clear, rapid sudden onset with the tightly defined symptom cluster. Not to be mistaken for anything else but ME. Ambiguity in research will get us nowhere.
     
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I was puzzled by the requirement that symptoms develop "either within 24 hours or over 1 week" as I was thinking that 'over a week' meant 'more than a week', then realised that it probably meant 'over the course of a week'. So why didn't they just leave out the reference to 24 hours? Am I still misunderstanding something?
     
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  16. franktwisk

    franktwisk

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    Jason has his own definition of Ramsay/ME.
    This is not ME as Ramsay and others have defined it.
     
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  17. Mij

    Mij Senior Member

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    I had a sudden onset, February 8 at 6:46am 1991. The intense vertigo hit but that was the only symptom for the next few weeks, after a couple of weeks I started experiencing a mild sore throat/ear and stomach grinding. I was till able to continue with school and work. After I was vaccinated several times is when I started to feel "different" and when I walked I was slowly losing stamina and not recovering very fast. I tested elevated anti-thyroid anti-bodies and the vertigo came back 6 months after the initial attack.
     
  18. jimells

    jimells Senior Member

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    Welcome to the forum, and thank you for taking the time to participate.

    What do you think of his overall approach in this paper?
     
  19. halcyon

    halcyon Senior Member

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    If I followed the references properly, I believe this is Jason's operationalized ME criteria, based on an amalgamation of Ramsay's monograph, the 1994 London criteria as appeared in the Westcare report, Hyde's 2007 Nightingale definition, and Goudsmit's criteria:
    Source

    Perhaps this will clear up some confusion as well. He's stating that onset of ME symptoms should be over the course of 1-7 days to classify as sudden onset. This does not count the time period of the appearance of the prodromal viral symptoms if I'm interpreting this correctly.
     
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  20. morse27

    morse27 Senior Member

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    For your question about GWI (ME triggered by immunizations adjuvant )

    tu pourras demander , lorsque tu feras ta dernière infusion , à notre docteur commun D. Kaufmann si il a déja observé mes biomarqueurs sur d'autres malades EM/CFS post vaccinaux: aucun parmis tous ceux de leur banque de sang et celle de standford."il l'a constaté dès le début en decembre 2014, suspect error lab NK52 ?"
    (ceux des vétérans du golf , identiques aux miens, plus hypogonadysme, intolérance à l'insuline, emballement du système immunitaire inné, cellules NK très élévées..... , car ils ont un certain nombre de malades EM ayant une cause vaccinale(HPV, Hepatite, grippe saisonnière.....qui sont sous rtx avec le même niveau de réponse...en terme de traitement, tous ont exactement les mêmes anomalies que ceux qui ont la forme naturelle de l'EM/CFS , mais aucun des GWV ont les vôtres, il est certain que ses deux maladies qui partagent beaucoup de symptômes communs sont TOTALEMENT différentes en terme immunologique et atteinte neurologique.
    je suis à présent intégré dans la dernière étude avec 400 soldats de la première du golf pour tester un nouveau traitement .j'espère qu'ils auront le temps de le développer pour les survivants (forment modérés) qui vivent l'enfer depuis 25 années.

    Nancy Klimas (NOVA) avaient pu différencier ses deux famillles de malades en 2014 par l'étude des citokines et des Inter leukines ,son étude est sans équivoque , l'EM/CFS n'est pas le GWI , tous les GWI Vétérans ne connaissent plus de sommeil profond N3/N4 , ce qui n'est pas un des symptomes de l'EM; Aucun homme souffrant d'EM même sévére ne connait l 'hypogonadysme et l'impotence)certains symptomes sont plus sévères dans votre maladie (faiblesse immunitaire)
    les vétérans du golfs 1991, sont en grande majorité sans abris, sans ressources financières, abandonnés par leur gouvernement , une majorité sont décédés de leur maladie (gulf war syndrome ou autres MAI : sla , sep, ...) mais sans aucune solutions ,n'avaient pas d'autre choix que le suicide, le VA à mis plus de 20 années pour accepter que ses soldats ne souffraient pas de PTSD , mais d 'une maladie autoimmune neurologique, à ce jour il en reste trés peu en vie et j'ai le sentiment que les recherches vont très vite s 'arréter pour ne pas faire éclater la vérité en ce qui concerne la cause de cette maladie induite par l adjuvant squalene dans leur vaccin contre l'Anthrax (avec squalene)
    . pour conclure ses deux maladies répondent au rituximab plus ou moins rapidement avec aussi des variables en tant que efficacité . dans les deux cas il semble que ce traitement n'est pas parfait pour ses deux maladies , cependant il permet d 'orienter les voies de recherches pour le futur .
    vous êtes des centaines ME/CFS à avoir tester le rituxan sur votre maladie
    et je suis le seul à l'avoir reçu dans le monde entier pour le GWI .je précise par erreur de diagnostique , mon expérience est précieuse pour les chercheurs qui travail depuis 17 années.

    translation
    you can ask when you will make your last infusion, to our Dr. D. Kaufmann if he has already observed other biomarkers of my disease on ME / CFS vaccine post patients: none among those in their blood bank and the standford.
    (those veterans golf, identical to mine;
    more hypogonadysme, intolerance to insulin, runaway innate immune system, NK cells very high ..... because they have a number of ME patients with a vaccine cause ( HPV, Hepatitis, seasonal flu ..... who are under rtx with the same level of response! ... in terms of treatment, all have exactly the same abnormalities as those who have the natural form of ME / CFS,
    but GWV have none of your own,
    it is certain that the two diseases share many common symptoms are different in immunological term neurological impairment.

    Nancy Klimas (NOVA) had been able to differentiate these two famillles patients in 2014 by studies of citokines and Inter leukines, his study is unequivocal, ME / CFS is not the GWI
    all veterans do not know deep sleep N3 / N4 in sleep recording, which is not one of the symptoms of ME;
    No man with ME even severe knows the hypogonadysme and impotence)
    some symptoms are more severe in your disease (immune deficiency)and lower for us
    and other are strong tiredness, joint and mudcle pain, gastro intestinal disorder...)
    veterans of the 1991 gulf war are mostly homeless, without financial resources, abandoned by their government, the majority died from their disease (gulf war syndrome or other MAI: sla, September ...) but without any solutions, had no choice but suicide,
    VA put more than 20 years to accept that our soldiers did not suffer from PTSD!!
    , but neurological autoimmune disease, to date it remains alive and very little I feel that research will soon s' do not stop to get to the truth regarding the cause of the disease induced by squalene adjuvant in their vaccine against Anthrax (with squalene)
    . to conclude this two diseases respond to rituximab ! more or less rapidly with as variable as efficiency. in both cases it seems that this treatment is not perfect for the two diseases, however it allows to guide the research options for the future.
    hundreds of ME / CFS patienst have test on your disease Rituxan inthe world
    and I am the only one to have received it worldwide for GWI .
    I accurate by diagnostic errors, my experience is valuable for researchers working for 17 years.
     
    Last edited by a moderator: Jan 20, 2016

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