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Your Fantasy Research Project

Discussion in 'General ME/CFS Discussion' started by beaker, Oct 5, 2012.

  1. beaker

    beaker CFS/ME 1986

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    A little fantasyland question of interest :

    If you had unlimited funds, but could sponsor Only ONE research project for ME/CFS, what would it be? A good way to look at where everyone is thinking these days. Try to keep it easy on the eyes : )
    Thanks!
    _____________________

    I would sponsor a thorough investigation of Elaine DeFreitas' work .

    ______________________

    mods : not sure this is posted in correct forum so please feel free to move. It's all good.
     
    Persimmon, Jarod and John Mac like this.
  2. PhoenixDown

    PhoenixDown Senior Member

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    A full sweep of every and I mean EVERY test there is, on 100 patients, and a hundred healthy controls. f(MRI)s, SPECT scans, sleep studies, NK cells, Mitochondria, Tilt table, everything.

    Then a public advertising campaign dispelling the myth that "there are no tests", demonstrating how establishment have misrepresented the truth.
     
    merylg, beaker, Jarod and 8 others like this.
  3. Stukindawski

    Stukindawski

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    I like PhoenixDown's idea. I'd be torn between that, and a major review of all the existing literature. There are a lot of papers on ME/CFS, but since governments haven't provided any decent direction to that research, it sometimes seems as though research is repeated rather than developed at times.

    A good review would provide good ideas to expand research and hopefully inspire new projects and attract new research teams.
     
    biophile likes this.
  4. Emootje

    Emootje Senior Member

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    Would love to see a study on Atrial Natriuretic Peptide and Lipoprotein Associated Phospholipase A2 (PLAC test).
     
  5. Desdinova

    Desdinova Senior Member

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    A humongous study of spinal fluid sorting patients by a real clinical definition not the ones pushed by the CDC or NHS.
     
    Allyson likes this.
  6. Snow Leopard

    Snow Leopard Senior Member

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    I'd like to do a systematic study into why so few researchers actually do research into ME or CFS, so that we can form a concrete plan as to overcoming the barriers and improve research interest by over a magnitude of order.
     
    taniaaust1 and Enid like this.
  7. Nielk

    Nielk

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    I would think that the answer to this is pretty clear:

    1- lack of funding
    2- lack of understanding
    3- lack of funding
    4- lack of pure definition of the disease
    5- lack of funding
    6- doesn't fall into a clear cut discipline
    7- lack of funding
    8- misconceptions about the illness being a psychological problem
    9- lack of funding
    10-lack of funding
     
    beaker, alex3619, Dolphin and 3 others like this.
  8. Dolphin

    Dolphin Senior Member

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    Afraid that seems like cheating. Every test there is could be millions of dollars per patient.
     
  9. alex3619

    alex3619 Senior Member

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    I would like to see a prospective study of 10,000 healthy people over ten years, half male, half female, in which every infection or illness had in depth investigation including next generation genetic sequencing for pathogens at the time of the infection. Those cases which went on to develop complications, including post viral fatigue and ME, would be tracked very closely with every likely test that can be devised. We would then track changes as they develop, from first infection to late stage illness. This would benefit a great range of medical research, not just ME. We would have a timeline, markers for disease progression, probable triggers, and many clues for causation. We could also track changes in those who recover spontaneously, and maybe find out why they got better and others didn't.

    The rules for this did stipulate there was an unlimited budget after all.
     
  10. alex3619

    alex3619 Senior Member

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    I am sorry Nielk, but you missed lack of funding, lack of interest, lack of funding, stigma of doing CFS or ME research, oh, and lack of funding. ;)
     
    SOC, beaker, SickOfSickness and 2 others like this.
  11. alex3619

    alex3619 Senior Member

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    Make that every test known to find abnormalities in ME and I would agree. There are millions of potential tests, and we shouldn't restrict tests to just easy commercial tests, so we have to limit them based on probability of results.
     
    Allyson likes this.
  12. Allyson

    Allyson *****

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    I would like to see EDS and CTDs investigated further; this is one study that would yield concrete results in a comparatively short time; is lack of blood supply to the heart brain and lungs when we are upright a possible cause of all or most of our ME symptoms?

    Easy to test - lie a control group down for a few weeks and measure all their symptoms against a group that spends a lot of (measured) time upright.

    Control for temperature and other vasodilating factors like alcohol (vasodilates) and caffeine (vasoconstricts) and mabe throw in some exercise in each position to see how people respond to that if they are not vertical.

    More on this topic for those not following can be found at this thread:

    http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehelrs-danlos-syndrome-stretchy-veins.20351/
     
    MishMash likes this.
  13. Allyson

    Allyson *****

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    Yes, Desdiova,
    and also into spinal fluid leaks due to weak meninges caused by connective tissue defects like EDS.
     
  14. SickOfSickness

    SickOfSickness Senior Member

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    Offer $3 million a year to qualified scientists and doctors to work on it 60 hours a week, 48 weeks a year. They keep half for their income and spend half on their research. They can pool money with other qualified researchers, hire assistants, pay study participants, whatever. They have to log every expense and get bigger ones pre approved. Everyone's research gets published and we can all review. With a prize of $10 million each for coming up with the best research every year. They have to spend $8 million of it on their next 2 to 4 years of ME/CFS research.
     
    beaker, Allyson and Jarod like this.
  15. Enid

    Enid Senior Member

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    For someone to bring together all the scientific findings (pathologies) and take one step back and grasp the whole picture - anyone out there who can put the jigsaw together.

    Even an idiot knows ((my family all docs) if the correct diagnosis is not made at the beginning the cascade of pathologies follow. And this is very specific striking the CNS - crossing the blood brain barrier to stem function, involving operation of all the major glands.
     
    merylg and beaker like this.
  16. Jarod

    Jarod Senior Member

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    It might be interesting to try and compare CFS commonality to other "diseases". Anything from chronological onset, to Potential overlapping treatments, and overlapping symptoms. Anything in common....

    I think the data would show that many diseases have huge amounts in common. Those diseases with the most in common could be lumped together for some kind of cross functional team to work on.

    A non-parisan independent team outside the normal government demonstrated dysfunction which has empirically illustrated incompetance in making progress.
     
  17. taniaaust1

    taniaaust1 Senior Member

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    My choice would be a study into the families who have this illness running throu the generations... why is this illness running in some families? What is different about those in these families who end up getting the illness? What changes go on when they get the illness from when they were healthy? Can it be predicted which family members will end up getting this? (I predict both my daughters are at far far higher risk then the normal ME parent to child risk..one cause she is hyperflexible and could get a diagnoses EDS and the other cause she had very very rare immune/viral thing (odds something like 1 out of every 100,000) for many years when she was young and her body couldnt fight off a common thing but we still dont know why). I bet she carries a predisposition to this illness too!! I want to know more about the genetics coming into play with this illness.

    I strongly suspect I was in a TH2 dominant state even before getting ME (or something was hidden and brewing without causing symptoms... for 10-20 years before i got this illness). I didnt get colds/flus at all as a child (just like many who have ME dont), I was tooo healthy (except a bout of severe mono at 15).

    Anyway.. a study into the risk of getting this if its in the family and the whys. Big clues may be gotten from studying high risk people and the before and after getting this...and what happens when they very first get.
     
    MishMash likes this.
  18. alex3619

    alex3619 Senior Member

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    Hi taniaaust1, this has been done to a very limited extent. There was an extended family with CFS in Australia. A Dr. Torpy did some genetic analysis and found they all had a defect in cortisol binding globulin. It mimics CFS. I was a subject in a follow-up study to test for prevalence of this problem. It turns out it is very rare.

    We really do need to study familial clusters for genetic causes. Identifying such subgroups will help everyone - they will get better treatment and recognition, the rest will bet better research as the research cohort will be less heterogenous.
     
    taniaaust1 likes this.
  19. taniaaust1

    taniaaust1 Senior Member

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    Yeah I remember reading about that family. Now just image if they did the same study on 30-100 different families who have ME/CFS instead of just one, what would then find?. One wonders how many rare conditions would be found then and who knows..some of those rare things could be common in the general ME/CFS group.

    All these which would be being confused with ME/CFS making our studies being filled with people with often very different conditions causing similar symptoms. Things we could ourselves have and havent been tested for. Many rare conditions may not be as rare as currently thought.
     
    alex3619 likes this.
  20. alex3619

    alex3619 Senior Member

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    I think those conditions are indeed rare, but like you say taniaaust1 , if there are a lot of them then, for example, 0.1% x 100 = 10%.
     

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