New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version

Discussion in 'Phoenix Rising Articles' started by Simon, May 12, 2016.

  1. user9876

    user9876 Senior Member

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    Rituximab is interesting not just because of the success of the trial but also because its success gives a strong hint at an auto immune mechanism whereas the mechanisms for action for the staph vaccine is unclear at least to me.
     
  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    One difficulty with this sort of study is ensuring blinding if the material is irritant - something referred to in terms of reactions in the paper. There are also various puzzling aspects to the study, one being the administration subcutaneously, which is not a usual way to give an antigen since the subcutaneous layer is immunologically rather inert. I am sorry I cannot be more specific but it does not look like the sort of thing I would follow up.
     
  3. Tuha

    Tuha Senior Member

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    You proposed those 3 models which are in your view the most promising. How far we are in understanding of those 3 models?
     
  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    These are more categories of models rather than specific models. Part of the idea of the review for me was to try to lay out all the possibilities in simple biological terms. There are various clues, as referred to in the text, but we need more specific and replicable leads.
     
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  5. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    I liked the editorial generally, except the Cytokine part which wasn't scientifically accurate.

    The historical scientific reseach on Cytokine expression in CFS is varied. Some papers, levels are normal, some are low, some are high. (This was known about for years and explained by Dr Tony Komarrof from Harvard Medical School in one of his talks). So there is a lack of consistent inflammatory evidence in 'CFS', but there is some in some subsets). It doesn't take a genius to work out these are likely the 'ME' patients, within the CFS heterogenous cohort. NB: CFS doesn't require inflammation, ME does. Indeed, 'CFS' doesn't require a single abnormal physical sign at time of diagnosis (unlike ME whose roots are in dysautonomia, post exertional relapse and neurological dysfunction, such as chronic pain).

    Many PWME (arguably a subset within CFS biomedical research) have very high Cytokines, this finding was also explained recently in the AFME conference by Dr Jose Montoya who said patients have huge cytokine expression levels and he wasn't talking about the first 3 years like Dr Lipkin and Dr Hornig's paper. The same finding is found by Dr Peterson and Dr Kenny De Meirleir and others.

    In conclusion I think it was an error in the editorial to only reference low cytokine expression, by referring to the most 'recent' research only. Recent research does not make the science more correct or exclusive of course.

    If we want to be robust about solving ME, we can't just represent one subset of CFS (non inflammatory) when so many severe grade people develop Arthritis, Allergies, Asthma (all involve inflammation) and some even develop COPD and Fibrosis (again involving inflammation). Many PWME also have POTS and subsets of POTS have Mast Cell Activation disorder, a potentially dangerous inflammatory reaction.

    Other than that oversight it was an interesting paper to read and a good effort.
     
    bertiedog likes this.
  6. Hermes

    Hermes

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    Firstly, congratulations to the authors, the paper was good and raises some interesting points. And Simon's article is very good.

    Nobody ever asks why Rituximab works ? destroying populations of B cells achieves what exactly ? and why does the illness return once Rituximab is discontinued and B cell populations grow again ?

    Pender et al and Lerner believe that EBV is capable of living inside B cells and instigating autoimmune reactions. And instigating EBV migration to other body parts, eg. nervous system, brain, vagus nerve, spleen, thyroid, liver etc. and causing infection and inflammation. And if EBV can live inside B cells, it should be able to live inside the cells and tissues of organs and joints instigating possible autoimmune reactions. Furthermore, EBV can adversely affect mitochondria function. This makes sense, and explains why Rituximab works in ME in the context of reducing infected B cells. I have explored this and related issues on www.me-ireland.com/right.htm#bcell

    While there is an obsession with finding one virus or pathogen to explain ME, the scientific research findings strongly suggest that several undiagnosed pathogens are involved and I would emphasise undiagnosed in the context that the NHS either refuses to test for them or has inaccurate tests (lyme), see

    www.me-ireland.com/scientific/6.htm

    http://www.me-ireland.com/scientific/8.htm

    As regards treatments, let us all proceed with what we know about ME and CFS and apply this knowledge towards diagnostics and treatments immediately, a good diagnostic checklist is available at www.me-ireland.com/structure.htm#8 Waiting around another few years and decades for "research" to discover something or not discover (through lack of funding) is not an option when patients are dying.
     
    Last edited: May 31, 2016
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  7. cfs6691

    cfs6691

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    I suspect that my CFS is undiagnosed liver damage because I had an adverse reaction to medication that is known to cause cholestatic liver damage prior to getting CFS,I am intolerant to chemicals(they are detoxified in the liver).Blood tests are not reliable in order to diagnose liver disease/damage which means that there are sick people who cannot get a diagnosis.Since the liver plays a role in the immune response(orosomucoid production,FXR nuclear receptor)shouldn't the liver be included in the research ? A few more reasons:Epstein-Barr can affect the liver,liver disease can affect brain function ,fatigue is the main and sometimes the only symptom in liver disease and as far as I know more women get liver disease than men.I can provide quotes from medical journals for most of those points.I belong to a subgroup that experiences fatigue all the time (as opposed to only after exercise)and which does not stand to benefit from rituximab.Should we be studied separately?If we are excluded from the diagnostic criteria,we will find ourselves in limbo and without any hope for a diagnosis and a treatment unless genetic testing progresses to the point that anyone will afford it(some of us live in countries where there is no financial Assistance and the relative who support us is advanced in age).Maybe our polymorphisms will match those of other liver patients.
     
  8. cfs6691

    cfs6691

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    Can you ask dr Davis why there is so much emphasis on post-exertional fatigue even though that does not really correspond to the symptoms of a number of patients?I thought that I was an exception but if you look at the thread ""The Big PEMPoll Question 3"" at the postings on the third page of the thread some of the participants mention fatigue in the morning and days after exercise.Why are patients lead to believe that fatigue days after exercise is post exertional fatigue while there could be a more plausible explanation(in my case interaction between hormones and bile acids resulting in liver cell damage or unregulated bile flow,in other cases there might be an allergic reaction to something environmental or another endogenous substrate).
     
  9. Joel1970

    Joel1970

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    As interesting as it is it really doesn't provide any concrete solutions or even a hope of such solutions. It is a lot of reading for not much reward.
     
    perrier and gettinbetter like this.
  10. Simon

    Simon

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    The editorial was the fourth most popular openn access paper across all Taylor and Francis journals (probably hundreds of them):
    Author Services Open Access: 2016’s most popular research
    No. 3 was from the Journal of Sex Research, who's popularity may not have been driven by purely academic interest.
     
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  11. Marco

    Marco Grrrrrrr!

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    Mea culpa :whistle:
     
    Invisible Woman likes this.
  12. Simon

    Simon

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    I think this tweet is spot on


    On a simlar theme is my blog in the BMJ arguing that patients can contribute to the science
    PACE trial shows why medicine needs patients to scrutinise studies about their health
    And this blog is relevant too: Time for a Patient Revolution

    [/blog promotion] :)
     
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  13. raghav

    raghav Senior Member

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    Has any research team looked at the impact of the intestines (Both small and large intestines) role in ME/CFS. I was put on cisapride for hypomotility of my intestines. The drug was called Normagut (Cisapride + MethylPolySiloxane) for my abdomen epilepsy symtoms without the gastro not knowing it was abdomen epilepsy. I took Normagut under supervision for two and a half years. Then I started getting mucous, gas, frequent bowel movements. After around 6 months of this GI problems I started getting chronic fatigue. So the role of the gut has to be taken into consideration. Just my humble opinion as a sufferer of chronic fatigue.
     
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  14. gettinbetter

    gettinbetter Senior Member

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    It is interesting and enlightening article
    But is seems like Western Medicine is very good at analyzing an illness like CFS but very poor at actually curing it
    I think because there is money in research not in the cure
    Like cancer research
    They will research and research until they find the exact cause (If they ever do)
    Then the pharmaceutical companies will develop a drug to "cure" it
    This will take a long time and the drug if it ever gets produced will be expensive and only a doctor can prescribe it.
    Meanwhile all these sick people with the illness will be finding solutions to their problem through trial and error but their solutions will be ignored and viewed as quackery because drug companies can't make money off herbs and supplements and conventional Doctors don't believe in this approach.
    My opinion
    Thanks
     
    Last edited: Aug 21, 2017
  15. Snow Leopard

    Snow Leopard Hibernating

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    I don't follow that argument (except perhaps the expense of any amazing treatments).

    Your example of no genuine cure being developed for a particular type of cancer requires everyone to be in on the conspiracy - such a conspiracy would easily be broken by one rogue capitalist to say, no, I'm going to make a lot of money by patenting and selling a treatment. Cancer treatments have made much progress - even if the media doesn't say so, many types of cancers are far more survivable now than they were 10-20 years ago.
    In reality, there are many treatments for specific cancers in the works (I've read many studies on novel cancer drugs as I've wondered if any of them cause 'Chronic Fatigue' as a side effect.) The ones that work have or are in the process of being approved.

    The fact is there is almost no money in ME or CFS research and this is what is holding back progress in the field.
     
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  16. ukxmrv

    ukxmrv Senior Member

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    I think if herbs and supplements were curative in ME and CFS we would know by now. When I developed ME in the 80's there were no pharmaceutical treatments.

    All we had were the herbs, supplements and non-conventional treatments. Here I am, 30 years later hoping that one day I can add to the anti-viral drugs I take.

    Some of the drugs being tested for CFS and ME treatment are old drugs that we could have been using for years if someone had funding to do the research.
     
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  17. ukxmrv

    ukxmrv Senior Member

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    Hi there. I'm not saying that ME is anything - but the drugs that currently help me are anti-viral drugs and immune modulators. None of which were available when I first came down with ME after a very severe virus.

    There are other pharmaceutical drugs that help me with viral symptoms or other ME symptoms - once again that either didn't exist or weren't used back in the 80's.

    There are sure to be more that haven't been tested for ME or will be developed in the future that I would like to add to my arsenal.

    If you have a look through the treatment section you'll find lots of threads on experimental drugs. Many of like you can buy as cheaper Indian and other generics online. That's what I do.
     
    Last edited by a moderator: Aug 23, 2017
  18. ukxmrv

    ukxmrv Senior Member

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    Have a look through the treatment section of the forum for PWME and CFS using antivirals. I've tested positive or had attacks of different viruses over time. Mainly Herpes family or Enterovirus (VP1) test.

    The drugs lessen the viral symptoms for me

    For "holistic" I am guessing that you mean non-drug alternative medicine. When I first became ill there were no conventional drug treatments for ME apart from a few experimental things like anti-fungals. Antidepressants seemed to be the most common medication offered.

    I spent thousands in those early days on supplements, Chinese medicine, Indian medicine, massage, body-work of various types, diet, exercise, Osteopaths, Naturopaths, counselling and many other things. I was treated by a healer and a Homeopath for free.
     
    Last edited by a moderator: Aug 23, 2017
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  19. Barry53

    Barry53 Senior Member

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    Only just discovered this brilliant thread.

    In engineering there is the notion of a "latched condition", where a system, given the appropriate conditions, pulls itself hard into a particular state and stays there, until some other stimulus changes it. There may be more than one such state. A trivial example is a light switch - once pushed far enough towards one position or the other, on or off, it then pulls itself fully into that state.

    It would indeed be wonderful if ME is, in effect, such a latched condition, and could potentially be switched back again, given the right stimulus.
     
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  20. gettinbetter

    gettinbetter Senior Member

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    Good clean air Surrounded by loving people al the time clean water nutritious food grown in healthy soil no threat of war no economic stress good weather good exercise
    Would the body fix itself in those conditions?
     
    Last edited: Aug 24, 2017
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