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Fresh Hope for ME Sufferers (UK Daily Mail)

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Mar 19, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    Fresh Hope for ME Sufferers (UK Daily Mail)

    Daily Mail article on Nuala Bingham - a lady with what they describe as having a complex post-viral illness similar to ME:

    Last year, Good Health told the moving story of devoted couple Harry and Nuala Bingham.

    He was the Lord Chief Justice's 34-year-old son who gave up a brilliant career in the City to nurse his wife, who was struck down with a post-viral condition so mysterious that it did not even have a name.

    Doctors had told Nuala, also 34, that her condition was chronic and there was nothing more they could do. She faced a life of almost complete immobility and permanent exhaustion.
    Now, a year on, we revisit the couple to find that, remarkably, cutting-edge treatments tracked down on the internet are slowly restoring Nuala to health.



    Full article here:

    http://www.dailymail.co.uk/health/article-48150/Fresh-hope-ME-sufferers.html

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
  2. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    Hmm, I know what my GP would say if I asked for treatments I'd found on the internet, especially if I couldn't point to:

    a) Cast iron scientific evidence.
    b) NHS and NICE guideline approval for it's use in ME.

    I can see why she doesn't want to call it ME, or even worse, CFS - keeps her out of the clutches of the CBT/GET brigade.

    I wonder whether her GP is NHS or private.

    I wish her well.

    Has anyone else used growth hormone or blood thinners?
     
  3. AndyPR

    AndyPR RIP PR :'(

    I honestly don't understand why this is being shared around:
    Yes, it says ME in the title but then clarifies that it isn't about ME in the article. The best bit about this is that the Daily (Hate) Mail has published an article that treats an ME-like illness as biomedical rather than implying it's all in her head.
     
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  4. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    One thing I hadn't taken in on first reading is the statement that she 'could produce no viable hormones'.
    I can't help wondering about this - can it seriously mean any hormone - so no oestrogen, progesterone, pituitary hormones, thyroid hormone, adrenal hormones, insulin, and all the other hormones our bodies produce?

    Surely this can't be true, or she'd be on all sorts of hormone therapies. It doesn't add up. Doctors would not tell someone who could not produce any viable hormones that there was no treatment available...

    .................

    @AndyPR I can see why it's being flagged up, because, other than this mysterious statement about hormones, it's possible that she could have ME - the onset and symptoms sound like ME. Maybe she has a sensible doctor unwilling to call it ME or CFS because of all the negative connotations.

    And, as others have said, it at least has the advantage to us that a condition 'like ME' is being treated bio-medically and showing improvements. And not a whiff of a suggestion of 'all in the mind' or CBT or GET. Surely that's good for us.
     
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  5. Barry53

    Barry53 Senior Member

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    As if that is not what people have been doing all these years? Government recognition of the need for real biomedical research might have been a better suggestion. Perhaps having a Lord Chief Justice in the loop makes that more difficult to state?
     
  6. Dolphin

    Dolphin Senior Member

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  7. Chrisb

    Chrisb Senior Member

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    The Bingham LCJ sons seem to have been born in 1967 and 1969 which would tally with the date of 2001. Congratulations to the Daily Mail. (And Dolphin-though not in the same sense.)
     
    Last edited: Mar 19, 2017
  8. AndyPR

    AndyPR RIP PR :'(

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  9. AndyPR

    AndyPR RIP PR :'(

  10. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    barbc56, Hutan, Pendergast and 6 others like this.
  11. slysaint

    slysaint Senior Member

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    ........I did email them the link to the NYT Tuller piece yesterday..........(wishful thinking on my part maybe that they might have read it).

    eta: maybe it's just clickbait off the back of it?
     
    Last edited: Mar 19, 2017
  12. Barry53

    Barry53 Senior Member

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    Me also similarly confused :confused:.
     
  13. Yogi

    Yogi Senior Member

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    Dejavu again with this Daily Hate article from 2002. I think it might be older.

    I recalled it two years ago when it resurfaced in 2014

    @ukxmrv solved the mystery then.

    http://forums.phoenixrising.me/inde...roving-on-three-treatments.34324/#post-536397

    Two years later in 2017 it is regurgitated again by the Daily Fail.

    How did you pick up this article today @charles shepherd

    Never read the DM but it appears they recycle old articles.

    Explains the frequent outrage in the UK over the lax benefit system with same family with 7 kids who get £100,000 in housing benefits and tens of thousands of other benefits repeatedly splashed on covers again and again. Making the problem feel much worse to the public than it actually was.

    Incidentally her father was the judge on the famous House of Lords legal case Page v Smith. It was appealed numerous times and because his daughter in law suffered ME he believed and accepted the diagnosis of ME in the early 1990s.

    http://www.bailii.org/uk/cases/UKHL/1995/7.html
     
  14. charles shepherd

    charles shepherd Senior Member

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    It was picked up by someone and posted by Tony on the MEA Facebook page today - because the date at the top is March 19th 2017

    I am aware of this story being published before and thanks to Tom et al for pointing out that it appears to be old news

    Having posted it on MEAF, and started an interesting discussion on the issues raised, we will leave it there for the moment - but it will quickly drop down the list

    We will also check to see if the DM are flagging it up again on other online site (which has a huge international readership) or printing it in the paper edition today

    Does anyone buy the Mail on Sunday?

    CS
     
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  15. TiredSam

    TiredSam The wise nematode hibernates

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  16. charles shepherd

    charles shepherd Senior Member

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    Comment from Dr Charles Shepherd:

    Please note that we have published this article from the Daily Mail for information and debate/discussion

    The MEA is NOT endorsing or recommending the use of human growth hormone, long term antibiotics or blood thinning drugs like heparin as a form of treatment for ME/CFS

    In addition, there is no research evidence, or results from clinical trials to assess the efficacy and safety of these drugs, to demonstrate that they are treatment options worth exploring in our current state of knowledge

    It should be noted that all three drugs can cause side-effects and that there are more serious risks associated with the use blood thinning drugs and human growth hormone

    So it is extremely unlikely that an NHS doctor here in the UK would be willing to prescribe any of these drugs for someone with ME/CFS

    And I would certainly not advise anyone with ME/CFS to "get on the internet and seek out solutions"

    It would clearly be helpful if the doctor involved in this case could publish a case report in a respected medical journal

    This would open up the medical/scientific debate - something that will not occur through publication in the Daily Mail

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
    19 March 2017
     
  17. BruceInOz

    BruceInOz Senior Member

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    My first reaction when reading the story was that I recalled heparin and antibiotics as being more in vogue in the late 90's.
     
  18. arewenearlythereyet

    arewenearlythereyet CURRENTLY MODERATED FOR NOT BEING SERVILE

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    Daily mail is just a comic though isn't it ? I thought everything they wrote was tosh?
     
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  19. Murph

    Murph :)

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    So the story is from 2001? This is a very clever way of cutting costs in the media biz. Just cycle stories from a few decades ago back onto the website! After all, stories don't change much. The names may be different but the themes remain the same.......

    (Honestly and seriously though, it's not 100% DM's fault if they load their back catalogue onto the internet and people dig them out and start sharing them as if they're new. However, it would be good if each story carried a time stamp.!)
     
    slysaint likes this.

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