1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Knitting Equals Pleasure, Despite ME/CFS
Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but ... she's back ...
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Reuters: Market failure can be sign of fatigue

Discussion in 'General ME/CFS News' started by Firestormm, Jun 11, 2014.

  1. Gingergrrl

    Gingergrrl Senior Member

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    @Firestormm How do you find all these amazing articles on CFS?!!! I am so impressed and please keep posting them.
  2. shahida

    shahida

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    The first thing that struck me was 'why does he care' because most people on the 'outside' don't. When they do it's usually due to a personal /family connection. it just made me wonder why /how he has come to care.
  3. Bob

    Bob

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    I was wondering about his motivation to write about ME as well, especially because he's unusually very well informed for a journalist. I wonder if someone close to him has ME.

    It would be good if we could somehow encourage him to continue writing about ME.
  4. geraldt52

    geraldt52

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    I sent the link to my daughter, and she noticed this in the sidebar...my bolding:

    "Edward Hadas writes about macroeconomics, markets and metals for Reuters Breakingviews. Before becoming a journalist, he worked for 20 years as an equity analyst in Europe and the US. His book, "Human Good, Economic Evils: A Moral Approach to the Dismal Science" is published by ISI Books in Wilmington, Delaware. He has also written a course-book about political philosophy for the Maryvale Institute in Birmingham. Edward has degrees from Columbia University, Wadham College, Oxford and the State University of New York at Binghamton. He has a website, edwardhadas.com."

    I wonder if some ongoing connection with Columbia University, and Dr. Lipkin's current interest, might explain Mr Hadas' interest?

    Has anyone tried to make an "official" connection with him on behalf of the Microbiome Discovery Project? Maybe the Microbiome Discovery Project could encourage Columbia University to contact him? Just thinking out loud.
    Iquitos, shahida, Blue and 3 others like this.
  5. NK17

    NK17 Senior Member

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    I just read Mr. Hadas's bio on his website www.edwardhadas.com/bio

    It's quite interesting and eyeopening as far as the motives for his interest in ME/CFS.

    He declares himself a christian and as such talks about moral economics and social justice.

    Sounds exactly what PWME and many others in today's society are in need of.

    I've also noticed that Invest in ME retweeted his article, maybe they have or will make a connection with him.
    Last edited: Jun 12, 2014
    Ruthie24 likes this.
  6. NK17

    NK17 Senior Member

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    Please read the article Caritas in Veritate from Edward Hadas' website.

    Even if you're not religious it makes very much sense.

    I have a feeling that Mr. Hadas will become another voice of truth on ME/CFS, his philosophical view is heavily imbued in good morality and social justice.

    He sounds like Llwellyn King's lost twin brother ;).
    SOC, Simon, RL_sparky and 4 others like this.
  7. Kati

    Kati Patient in training

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    Speaking of Llewellyn, perhaps the 2 of them could be put in contact. Our community could help him as much as he could help us.
    Sushi, WillowJ, RL_sparky and 2 others like this.
  8. NK17

    NK17 Senior Member

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    Yep
  9. Firestormm

    Firestormm Guest

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    I believe he was at the recent Invest in ME conference (from what Dr Charles Shepherd inferred on Facebook yesterday). As for why he was there - his motivation - I don't have a clue.

    Should mention/remind of course that Mady Hornig (Columbia and Chronic Fatigue Initiative) was presenting at that conference and perhaps it is reasonable to assume that reference in his article to 'crowdfunding' was at least in part aimed at the Microbe Discovery Project being led by Dr Lipkin/Dr Hornig and Columbia as part of their continuing work on ME/CFS.
    Simon, WillowJ, RL_sparky and 4 others like this.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    We need someone like 'the rock' and Hugh Jackman, both need to come down with cfsme and then promote our cause. People might listen. And for the ladies let's throw in Pink.

    might be a wicked thing to say but I guess it's those types of profiles that would bring this illness into the main stream. Or another epidemic, I hope not? ?

    I'm not wishing this on the people mentioned but be good to have those types of profiles supporting us??
    shahida likes this.
  11. NK17

    NK17 Senior Member

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    Isn't it sad that sometimes we find ourselves wishing for a celebrity to come down with ME/CFS?

    IMO celebrities don't seem to come down with it in the prime of their lives because if they really did they wouldn't have had the time and energy to become celebrities ...

    ME makes you a prisoner of your own body for months, for years and even with the best doctor and the best home support system you can hardly lead a normal life, at least not the stressful kind of lives that many of us were leading prior to coming down with ME ...

    I always wonder what Cher did to get back on stage and Flea of the Red Hot Chili Peppers too. I mean have you seen them?! Maybe they're a classic case of selling your soul to the devil?!?!
    Too bad I don't believe in occult or magic .

    Maybe if they really had it and somehow recovered they just don't want to go back to their painful ME times, they just want to move on, which is very human ...
    Last edited: Jun 14, 2014
    heapsreal likes this.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Sad to say this but if one gets cfs/me they hide it as its seen as some type of mental break down or something, but if a celeb gets cancer its sort of worn as a badge of honour that they have battled through, which they have.

    I think we will always fight this battle until they come up with a good diagnostic biomarker and can prove that those with cfs/me have increased risk of other medical conditions like cancers etc :cry:
  13. shahida

    shahida

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    In the UK the minor celebrity Martine McCutcheon has spoken about her recovery from ME-unfortunately she states that the lightening process played a huge part in her recovery. It's funny to read others have had some of the thoughts I've had-which ive felt bad for. Mine was what if Madonna's daughter came down with it, wouldn't Madonna be a verciferous campaigner! Of course I don't wish this on anyone.
    Tito and heapsreal like this.
  14. Nielk

    Nielk

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    I think that it is because of the connotation of ME/CFS being a psyh disease that celebrities would shy away from making it public.

    I would bet that once we have a proven biologic biomarker showing this to be a definite serious disease, they will come out of the woodwork.
    SOC, WillowJ, shahida and 3 others like this.
  15. A.B.

    A.B. Senior Member

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    Speaking of celebrities, maybe it's possible to get the pope involved in ME/CFS advocacy.

    I think biomedical research makes a lot more sense to him than psychobabble because he holds a chemistry degree.
  16. NK17

    NK17 Senior Member

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    @A.B. I didn't know that about the new pope!

    He really seems to be so outspoken and on the side of the oppressed and against the powerful and greedy.

    I'm no expert, but from what I hear and read pope Francis is a real human apostle and a true believer in what Jesus used to say.

    In his own way the new pope is walking the original talk, if you see what I mean ;).

    We should write and collect our personal stories of suffering, neglect and abandonment and then ask Edward Hadas (the journalist) to write to pope Francis.

    I really think we should start to try to reach the higher echelon ...
    SOC and A.B. like this.
  17. shahida

    shahida

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    This may have already been done but what about asking philanthropists for help in terms of maybe sending a copy of a DVD which hightlights the plight on a human level- eg. voices from the shadows. Then maybe attaching a personal letter as well of someone's own story and that governemnts wont give money for research . Like the Lipkin study which we're having to fund and it doesn't look likely barring a miracle that the total will be reached- sorry don't mean to be negative but realistic.
    Like the Bill Gates foundation?
    Maybe I should've posted this on the lipkin thread,
    Iquitos likes this.
  18. Nielk

    Nielk

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    I did some research about the Gates foundation and they are not interested in health issue in developed countries.

    Maybe if we all move to the African jungles, we would get humanitarian help.
  19. Simon

    Simon

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    Article reaches 1,000 likes on facebook:

    upload_2014-6-14_11-26-18.png
    rosie26, Bob, NK17 and 8 others like this.
  20. Iquitos

    Iquitos Senior Member

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    Bill Gates' blog offers to receive emails with suggestions on what he should write about. Maybe we should all, on the same day, write him suggesting he write on why a rich American would not help find a treatment/cure for an orphan disease that the US is not spending appropriate amounts on solving.

    With a link to the Hadas article, of course.
    jimmy86, Cheshire, SOC and 1 other person like this.

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