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9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
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Invest in ME London conference 2012

Discussion in 'General ME/CFS News' started by Kate_UK, Oct 12, 2011.

  1. Ember

    Ember Senior Member

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    I appreciate their printing Dr. Bruce Carruthers' presentation from the IACFS/ME Conference last September. Dr. Carruthers writes in “The New International Consensus Criteria for M.E. - content and context:”
    And for this publication, he adds:
    garcia likes this.
  2. Bob

    Bob

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  3. Enid

    Enid Senior Member

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    Senior members all round ? What is important is research findings. So high Biob and all the rest - watch it !!!.
  4. Bob

    Bob

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    I might have misunderstood you there Enid, but you are a 'senior member' as well!
    (And a 'valued member' :))
    The rest of us just haven't got around to changing the automatic labels under our avatars.
    :hug:
  5. Enid

    Enid Senior Member

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    :sleep: No Bob - just watching research findings open mindedly as it all happily progresses at last. Not too interested in my avatar - a photo managed to get in only.
  6. Bob

    Bob

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    Ah, OK Enid, sorry for misunderstanding.
    Yes, I agree, it is fascinating to watch all the new research unfold, isn't it.
    I think that Rituximab might lead us in all sorts of interesting research directions now.
    I'm really impressed with what iiME have done with their conference this year, getting all the immune-related researchers together for a two day working group.

    BTW, I love your robin avatar :)
  7. Enid

    Enid Senior Member

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    If you are looking for Seniors in ME - try Iime, Prof Hooper, Countess of Mar, and the few in the UK dedicated to real science - not me.
  8. Enid

    Enid Senior Member

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    It is not just "fascinating" Bob - you mistake me - this is about millions who suffer ME. The ignorance that surrounds it and the isolation of sufferers in an established medical ignorance in the UK. Willingly over decades who have fought against scientific findings to label "all in your mind"- theirs.
    Ember, Sing and Bob like this.
  9. rlc

    rlc Senior Member

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    Hi Ember I to noticed these extremely important statements By Dr Carruthers, hopefully this will put an end to some very important disputes amongst the medical and patient community.

    It states very clearly that CFS is not another name for ME and that ME is a separate different disease.

    That ME is a rare condition and only makes up 10% of the total that have been given a diagnosis of CFS. This fits in very well with what the likes of Drs Hyde and Mirza have been saying that they are finding 80 to 90% misdiagnosis rates, and that the people who don’t have ME have other findable known medical conditions.

    It shows how extremely important correctly defining, assessing and diagnosing ME patients is, for there to be any progress in research, in the past research has been plagued by mixed cohorts due to using CFS definitions. It is also extremely important that people with ME are correctly diagnosed and separated from the CFS group, because if Rituximab ends up being given to the patients in the CFS group, because it is a dangerous drug, giving it to these patients who often have other undiagnosed diseases will very likely lead to deaths, which is likely to cause Rituximab treatment to be stopped for everyone until it is worked out what is going on, which may delay treatment for ME patients for years.

    These statements by Dr Carruthers show how misguided the plan by the colition4ME/CFS to have CFS reclassified as a neurological disease with exactly the same ICD code as ME is. It will only continue the confusion between the two different groups and have a negative effect on research, the vast majority of patients in the CFS group do not have a neurological disease, although a small minority will have undiagnosed neurological diseases such as Parkinson’s and MS, but these already have their own separate codes. Giving CFS the same code as ME will help no one!

    Hopefully statements like these by Dr Carruthers will lead to a rapid change in the way ME is being represented on the web, where most sites run for ME patients misrepresent ME as being another name for CFS and that they are the same illness, which only confuses patients, it is also if we are to get any support from the media important to give them correct facts. I also hope that as the ICC gets more established that researchers will stop using the name CFS on ME research.

    I have noticed some statements since it came out that show a misunderstanding of what the ICC says, it states that the symptoms that they outline in it are found in ME patients, but it also says that other conditions can have the same symptoms and that they have to be ruled out before a patient can have an ME diagnosis. It is only by having the symptoms that they outline plus having all other diseases that can cause these symptoms ruled out that the 10% that have ME can be found.

    Unfortunately they have not included instructions for what these diseases are and what tests are to be done, but I imagine that they will produce it soon in the other information they intend to publish to support the clinical use of the ICC. Until then the best instructions to be found on diseases and testing to be done to rule out all other conditions and confirm a diagnosis of ME are found in the new IACFS/ME primer for clinical practitioners http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf no matter what people think of the other information in this document, the information on how to test for other diseases that can cause the symptoms of ME is generally very good, There are a few omissions like not mentioning wrong reference ranges for B12 and TSH but on the whole it is good!

    Personally I’m very pleased with the way things are going in research. We are finally seeing ME getting the attention it deserves and some brilliant work being done by very high quality researchers, as long as they can get enough money for clinical trials etc, I think we are likely to see this whole mystery solved once and for all over the next few years. But unfortunately there will still be the 90% in the CFS group who are still being diagnosed with the none existent illness (CFS) that the CDC and Wessely school invented in the eighties. Only getting rid of CFS as a diagnosis and getting these people properly tested to find out what is wrong with them will solve that problem.

    All the best
    garcia, justy and floydguy like this.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    There must still be alot of overlap between cfs and me. If only 10% are diagnosed or picked up in cfs deinfinition properly but in the ritux study a much higher percentage of responders then 10% who are probably a mix of me and cfs. I think there will be sub groups just like in cancer eg breast, prostate, bowel etc

    I think in the end its going to come down to sub groups for the right treatment. These sub groups i think are what dr peterson are leaning towards especially herpes virus sub groups as there are treatments for these already with antivirals etc

    They will get there but i think its going to be a hornets nest to start with working out who has what plus many who have had little contact with doctors who also have other illnesses with it that have been undiagnosed . Lets hope this process speeds up.

    cheers!!!
    barbc56 likes this.
  11. Bob

    Bob

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    I expect that they will continue to research CFS, CFS/ME, and ME together, but will start to use the various criteria (Fukuda, CCC, ICC) to separate the patients into groups. I'd be happy with that way forward.
  12. mobyjoby

    mobyjoby

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    at the invest in ME conference the Rituximab researchers said that 28 out of the 30 patients did fit the Canadian criteria and from reading the literature we can see that at least one of those who didn't meet the CCC was in the placebo group. So at least 14 out of 15 in the rituximab group met the CCC.
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    A good biomarkers hopefully sort it out which is why they are interested in the nk bright cell dysfunction test, i think combined with a good criteria can help sort it out more accurately.

    cheers!!!
  14. alex3619

    alex3619 Senior Member

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    Without biomarkers its all hypothetical. No matter who said it, no matter what they said, you need objective evidence to be sure. As successful biomarkers start to be used in research I expect to see stratification in results via biomarkers - then we will see which definitions they might or might not match up to. We will also get to compare biomarkers and biomarker combinations for research effectiveness. Later this will translate to clinical studies then finally clinical practice. With so many candidate biomarkers being studied there should be results at some point. Its still hard to predict when though. Bye, Alex
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  15. Bob

    Bob

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    I agree with this, but I also think it would be helpful to use Fukuda, CCC and ICC in each research study. Or at least CCC and ICC. Just over the past year they seem to have started using CCC, which is progress.
  16. alex3619

    alex3619 Senior Member

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    Hi Bob, I have proposed on a number of occasions now that studies do enough testing to enable characterization of patient cohorts on most definitions. They can then publish a paper on one definition, then rework it on another, then publish a comparison - or if others can access the data we can have everyone test their own favoured definition or model using the same data. This would only require some extra data gathering for the patient cohort in a study, and would yield an enormous amount of data in results. It would however require that they use a very multi-disciplinary approach, which might require additional expertise beyond what they often employ. Bye, Alex
    barbc56 likes this.
  17. Sing

    Sing Senior Member

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    At this point I think this thread is right up to the cutting edge. One needs to use the best definitions, CCC and ICC, to identify the biomarkers correctly, then the biomarkers become the basis for quickly identifying the illness, right? For those who don't fall into this set, there will be other sets, also linked to biomarkers.

    As much as I admire Dr. Hyde's work and perspective, I do think he has gotten a bit ahead of the data with his conclusions. Then tooo, it doesn't help us to be fighting ourselves over who qualifies or doesn't to be a member of the exclusive club of ME, so to speak--AS IF the definitions we have, from any source, are exactly correct and totally reliable, when the picture is not yet crystal clear in terms of the necessary symptoms. Clearing up all of the confusion around the definitions won't be possible without demonstrated biomarkers--maybe a set of them, not just one. Just insisting that ME is this and CFS is that won't do the whole job. The circular loop is that researching the biomarkers properly requires the best of the definitions so far, based on the observations of the best clinicians in this field. Alex can see the kind of process that will be necessary, I think.

    If my understanding is off base, please correct me.
    jace likes this.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    agree! I dont like the arguements of ME being different to cfs, because like already mentioned, we dont really know. I think what we want is to weed out the wessely school of depressed/dysthymic patients as they dont have the same immune or neurological abnormalities as many of us have, also the people with other causes of fatigue like hypothyroid, anemia etc but also be careful not to disclude them as they could have multiple disorders going on, one of which is cfs/me, good biomarkers will sort that out hopefully.

    it really does feel like we are moving in the right direction though.

    cheers!!!
    barbc56 and justy like this.
  19. Sing

    Sing Senior Member

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    Yeah, that makes sense to me, heapsreal. I always like to read your "cheers!" too. Never fails to lift me up. I am like a dog, geared to the imperative.
    So,

    Onward!
    justy and heapsreal like this.
  20. floydguy

    floydguy Senior Member

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    I have to disagree to some extent. However, we won't get any biomarkers with the mixed cohorts. My primary issues appear to be immune system related. I really don't see how it helps to have me in research groups where POTS, endocrine and other issues are more prevalent. And I'd prefer that I be researched alongside those that have very low NKC function and other similar immune system issues.

    At some point, the odds are pretty high we will be divided up. We shouldn't fight it, we should embrace it. The reason for the contention is these mixed cohorts. The sooner we split people up the sooner we can make progress and lose the ridiculous labels.

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