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MS research versus ME/CFS research

Discussion in 'General ME/CFS news' started by Jaybee00, Sep 17, 2019.

  1. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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  2. strategist

    strategist Senior Member (Voting Rights)

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    Judging by the abstact titles, there seem to be more subtypes of MS than the usual relapsing-remitting and progressive forms.

    Maybe we can get MS researchers and clinicians involved in ME research.
     
    Last edited: Sep 17, 2019
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  3. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    I had a quick look and the populations seem to be:

    MS
    100,000 uk
    1 million US
    2.5 million globally

    ME
    250,000
    1 million
    15-30 million

    Not sure how reliable they are. Looks like between 1 and 12x more patients
     
  4. jamari

    jamari Established Member (Voting Rights)

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    I think it's fair to say that funding tends to correlate with disease mortality rates.
     
  5. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Could well be true.
    My guess is the amount of government/taxpayer- type funding (also) correlates with how much is raised privately. The more private money there is, the more researchers there will likely be to make grant applications, especially those with pilot data who have the best chance of funding.
     
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  6. ringding

    ringding Senior Member (Voting Rights)

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    I also think that research into specific diseases benefits from high profile celebrity involvement, i.e. celebrity sufferers, or celebrities that fund raise due to a familial link. That makes it higher profile and perhaps encourages people to contribute. Are there any 'celebs' who've come out with ME?
     
  7. Dolphin

    Dolphin Senior Member (Voting Rights)

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    https://www.mssociety.org.uk/research/for-researchers
    This one UK MS charity would have raised 20 (?) or more times what has been raised by all the other UK ME charities.

    And all the UK ME charities together have possibly raised more than have been raised privately Europe-wide (excluding the UK). Outside Norway, I'm not sure large amounts have been raised by any ME charities in European countries? Only a small enough number may even have raised more than €100,000???
     
    Last edited: Sep 17, 2019
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  8. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Yes there are but unfortunately they generally support things like the Lightning Process and other pseudoscientific stuff :emoji_face_palm: E.g. Martine McCutcheon
     
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  9. ringding

    ringding Senior Member (Voting Rights)

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  10. Simbindi

    Simbindi Senior Member (Voting Rights)

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    However, it is not that uncommon to get MS whilst relatively young. My daughter's best friend was diagnosed with it in her final year of uni. She has gone on to have a successful legal career and now a young baby (while still in her 20's). So these working adult sufferers are likely to be contributing to research fund raising, as are their immediate and extended families. The public are alos generous with donating to MS and Parkinsons research - the conditions become very visible with time (although not in their early stages). The tremors in particular invoke substantial sympathy in the public.
     
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  11. beverlyhills

    beverlyhills Established Member (Voting Rights)

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    Objective diagnostics in MS allow for better patient cohorts - lesions, objective measurements of optic neuritis, oligoclonal banding. Even beyond that, they properly split the illness even with 1/10th the patients.

    It is a pharmaceutical goldmine for endpoints - but lesion size etc. rarely affects quality of life so it is ultimately irrelevant - it is a spandrel that drives research and massive cash inflow.

    Why does CFS get less funding or awareness? It strikes subjects before they can contribute heavily to artistic, career or athletic endeavours OR after they were never going to accomplish them anyways. In other words, virtually no one between 23-27. You would have to be a savant (extremely rare, these people completely disappear into niche academia even when healthy) or have a famous spouse. You will get a few athletes claiming CFS - they are doing it for PED exemptions. You cannot have CFS and be a professional athlete.

    MS has its equivalent of the Lightening (?) Process called the Wahl (?) method, something diet-related, and like every illness, has its fair share of attacks from the psychosomatic lobby.

    CFS has a mild steak and lobster problem. In the Americas where the myth is that people on benefits eat all this steak and lobster - and sometimes they do it is good tasting. I am in a group for mother's and there is a woman who said "here is a picture of the hike I just did. Anyways, my husband and I are unemployed due to CFS and we are thinking about having our third child it is crazy I know LOL" and then Whitney Dafoe, who is catatonic. I am not too frustrated by this generally (people die from lymphoma, or survive like it never happened, autism has a wide variance) but it is a bad look when a disease has no biomarker or treatments.

    MS also has a fundamentally different discourse. So many people are in the field that you can say "Hey, that idea is terrible, you have no idea what you are doing" and they obviously will attempt to counter with a response, but it will not destroy your career instantly. You ever notice how there is no dissent amongst CFS research, and everything can fit somehow within their own hypothetical constructs? You have to be collegial in CFS because 10 people in the world control the money - literally.

    MS had CCSVI treatment - it was out and debunked within 2 years - start to finish. That is a treatment trial with patients no less, and a complicated one, with surgeries and massively multi-disciplinary input. In contrast, XMRV was extremely stupid day zero, no CFS researcher said anything other than neutralities and it took adjacent researchers to disprove it.

    In summary, MS is more profitable.
     
    Last edited: Sep 18, 2019
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  12. NelliePledge

    NelliePledge Moderator Staff Member

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    From very brief research I read onset of MS was between 20-50. Onset (or at least diagnosis) of ME is a broad spread from children to older people with peaks in 20s and 40s. There are people with ME who have worked just as there are people with MS who have younger onset and maybe haven’t worked. I suspect the age issue isn’t that much of a factor.
     
  13. Dolphin

    Dolphin Senior Member (Voting Rights)

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    There are lots of endpoints that can be used in ME/CFS studies e.g. fatigue score; pain score; sleep score; cognitive function (measured with testing or questionnaires); actigraphy; etc.
     
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  14. Dolphin

    Dolphin Senior Member (Voting Rights)

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    A lot of private MS income comes from legacies while the figure seems to be much, much smaller for ME/CFS for whatever reason. I don’t buy that people with MS leave 20 times or whatever the total assets of people with ME/CFS [quite a lot of people’s wealth tends to come from inheritances (parents, spouse, etc.) and doubt there should be huge differences there]; I think fewer people with ME/CFS are writing ME/CFS research funds into their wills.
     
    Last edited: Sep 18, 2019
  15. Mithriel

    Mithriel Senior Member (Voting Rights)

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    Very few people die of actual MS. The mortality comes from the same reasons as it does in ME mainly the consequences of immobility. One notable exception is when the muscles of the gut become paralysed.

    I have been going to an MS therapy centre since 1994. In those days MS was seen as a death sentence, mainly because no one was certain a person had it until they were severe but they were fighting to show it could be mild and that people lived for years with it and it was even found at autopsy in people who never knew they had it.

    By contrast, the ME association and others would not admit to the seriousness of ME. When they did an issue of Perspectives magazine with articles by more severely affected they were inundated with complaints. One woman told me off because she did not ant her teenage daughter to think it could get as bad as all that (and we were not even talking about being bedridden or tube fed for decades.

    But the image remains for the public, MS is very serious; they get lots of funding from banks and shops that sort of thing where ME only gets it from patients as everyone gets tired!

    Forty years of trivialising from our "experts" does not help either.
     
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  16. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    But I thought Ms actually has quite low mortality. I don’t think ms And Parkinson’s and arthritis have loads of money and research interest way way above us because of high death rate. Unlike HIV for example.
     
  17. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Whilst both can hit young people Me usually immediately impacts work , often preventing it , to higher degrees than MS, I saw a stat on numbers in work in MS and it was higher than ME. There is argument that MS seems often diagnosed late part negating what I’m about to say but when it’s diagnosed early people can still work or run marathons sometimes in ways we would see as exceptional
     
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  18. NelliePledge

    NelliePledge Moderator Staff Member

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    Had a look on some MS websites apparently MS reduces lifespan by about 5 to 10 years.
     
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  19. NelliePledge

    NelliePledge Moderator Staff Member

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    Yes I think it’s the level of disability being higher in ME than MS that the biobank found in their paper. Presumably that applies across age range. Hard to actually deploy that information to influence people without sounding like we re trying to outdo MS patients tho.
     
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  20. Trish

    Trish Moderator Staff Member

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    MS and Parkinson's disease are truly awful for a lot of people. I am glad they are getting significant research funding.

    I agree that ME needs singificant funding too.
     
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