Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London

Discussion in 'Phoenix Rising Articles' started by Simon, Nov 5, 2014.

  1. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,903
    Likes:
    5,386
    Scotland
    Thanks, Simon. I'm still not able to get very much from the videos so your article is invaluable.

    I'm grateful to Dr Lipkin for turning his attention to ME/CFS but I have to admit to feeling unusually huffy towards him for the following:
    That's all very well, but I don't think people with Alzheimer's or autism are inclined to make many demands of policy makers - but their fit and well parents, spouses, siblings and children are. As far as I know, MS typically has a different pattern of severity over time compared to ME/CFS. I know that's a generalisation but ME/CFS tends to hit more severely earlier. It's not a condition that lends itself to organisation and being vocal.

    I doubt that there are many people on this forum that are as physically able as I am even if cognitively I don't always do too well. I work full time and am stretched to the absolute limit. At the moment I can barely organise my own life: in better times, I helped found a national governing body for a sport and managed the national squad. I desperately need to work fewer hours to give myself a chance but I can't afford to. And I consider myself to be one of the more fortunate among us.

    Here's what Jeanette Burmeister blogged recently:
    I've been seeing this situation as a long game, believing that nothing too significant is going to happen until there is a biological finding that will finally force the psychosomatic label to be laid to rest once and for all. Only then will major funding come for biomedical research because that's when people with ME/CFS will have the confidence to get vocal (even of they can't get organised). And that's when we will finally be granted the credibility we don't currently enjoy.

    As a patient group, if we can't organise ourselves now to do what Dr Lipkin is urging us to do, who will? Why have our charities been so ineffective in this area?
     
    picante, justy, ukxmrv and 9 others like this.
  2. NK17

    NK17 Senior Member

    Messages:
    592
    Likes:
    1,519
    Thanks Simon for another well-written article. Knowing what Dr. Lipkin is up to and the ramifications of his research team efforts are helping us cope with the neglect PWME have to endure.
     
    Last edited: Nov 7, 2014
    Gingergrrl and Simon like this.
  3. Cheshire

    Cheshire Senior Member

    Messages:
    1,122
    Likes:
    9,006
    I too think that is a major issue. The psychosomatic label prevents lots of people to act publicly (I'm not an exception).

    When I was diagnosed I openly talked to my friends and familly (but not to anybody else) about the "ambiguity" of such a disease. One person then disclosed she had fibromyalgia. She had told her closest friends she had rheumatisms, because she felt terribly ashamed. She was sick and on top of that bearing that terrible burden of secrecy, guilt and self contempt. And she felt relieved to tell the truth.

    Shame is the leash used by the BPS school to prevent us from acting. And it's just disgusting.
     
    ukxmrv, Sean, lycaena and 6 others like this.
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,996
    Likes:
    12,902
    Cornwall, UK
    Thanks, Simon. Wow - Dr Lipkin is a busy boy! I wonder how he can do justice to so many different areas of research. Presumably he has a lot of colleagues/collaborators.

    Could someone explain the sentence I've quoted?
     
  5. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,903
    Likes:
    5,386
    Scotland
    I don't think that the quotation about chronic Lyme disease is intended to represent Dr Lipkin's own view although I did do a slightly shocked double take when I read it before I realised all was well. I presume you're referring to the secondary gain part?

    This is the BPS allegation, the same one they trot out for ME/CFS. You know: benefit junkies, work-shy malingerers. That sort of thing.

    Because obviously a life on benefits and social isolation is preferable to being a productive member of society with an active social life, the income to enjoy it and the respect of your peers.
     
    picante, Gingergrrl, justy and 5 others like this.
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,996
    Likes:
    12,902
    Cornwall, UK
    Yes - that's what I was referring to. I wondered whether that was what was meant.

    I see what they mean. Yes, I have really relished living in poverty and not being able to use the knowledge and qualifications I spent ten years studying to obtain...
     
    picante, Gingergrrl, SOC and 2 others like this.
  7. Sasha

    Sasha Fine, thank you

    Messages:
    12,808
    Likes:
    34,302
    UK
    From the context, it's clear that the "secondary gain" theory of Lyme is not Dr Lipkin's:

     
    Simon, RL_sparky, Scarecrow and 2 others like this.
  8. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,903
    Likes:
    5,386
    Scotland
    I'm sure. And for my part, I can't tell you how much I enjoyed not being able to go to vet school, missing out on a vocation that I had longed for since an early age. Very rewarding.
     
    picante, Gingergrrl, jimells and 3 others like this.
  9. Izola

    Izola Senior Member

    Messages:
    492
    Likes:
    576

    We did have a charity. It burned us. Iz
     
  10. jimells

    jimells Senior Member

    Messages:
    2,007
    Likes:
    6,147
    northern Maine
    Being the government means never having to admit to errors. But they know they have screwed up big time and are busy trying to cover their butts. Just like any living creature, the first instinct of a bureaucracy is survival. The truth of this illness and our barbaric treatment is a threat to the NIH/CDC. They are acting, and will continue to act, to protect themselves from this threat.
     
    Izola and picante like this.
  11. 5150

    5150 Senior Member

    Messages:
    333
    Likes:
    244
    From a once healthy and athletic person, I have struggled 30 years with this disease that has almost killed me. I am so grateful to the NIH and the CDC for their prompt attention!
     
    Izola, picante, Gingergrrl and 4 others like this.
  12. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,876
    :rofl:
     
  13. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,634
    Likes:
    12,500
    South Australia
    :cry:
     
    Izola and MeSci like this.
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,996
    Likes:
    12,902
    Cornwall, UK
    Indeed - :cry: for all of us. Amazing how little :cry: we actually do, faced with this illness AND the institutional and social abuse.
     
    picante, vli, jimells and 1 other person like this.
  15. Sean

    Sean Senior Member

    Messages:
    3,263
    Likes:
    18,040
    Indeed, when the full story of this sad shabby chapter in the history of medicine is written I believe patients will come out of it as having shown truly remarkable resilience, courage, patience, and restraint, under extraordinarily difficult circumstances and provocations.

    And the likes of Wessely, White, Chalder, et al, will not.
     
    vli, MeSci and ukxmrv like this.
  16. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,330
    Likes:
    4,058
    N. California
  17. Bob

    Bob

    Messages:
    10,703
    Likes:
    34,252
    England (south coast)
    Izola and Simon like this.
  18. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,330
    Likes:
    4,058
    N. California
    @Bob Thank you!
     
    Bob likes this.
  19. Bob

    Bob

    Messages:
    10,703
    Likes:
    34,252
    England (south coast)
    BTW, for future reference, you can right-click on a YouTube video to obtain its url.
     
    Dreambirdie likes this.
  20. Sing

    Sing Senior Member

    Messages:
    1,659
    Likes:
    1,404
    New England
    Thanks for a good article. I am also grateful that Dr. Lipkin is still interested and is looking for different things and in some different tissues. I wonder about what is going on with our glial cells in the brain and with our mitochondrial function, and if there is any way he can try to learn about these.
     
    Sasha, Simon and Bob like this.

See more popular forum discussions.

Share This Page