August 8th, 2018: Understanding and Remembrance Day for Severe ME
Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.
Discuss the article on the Forums.

Crappy article - "Gentle steps towards beating chronic fatigue"

Discussion in 'General ME/CFS News' started by Kyla, Sep 21, 2016.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,227
    Canada
  2. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,530
    At first I thought that was to do with the Mayo Clinic, which would have been worse.
     
  3. taniaaust1

    taniaaust1 Senior Member

    Messages:
    12,076
    Likes:
    13,174
    Sth Australia
    what a weird article, this physio guy seems to suddenly think he's suddenly an expert in Nutrition for our illness on reading that we hibernate.

    "‘Bizarrely, the changes echo those seen in hibernating animals’.
    Why is that such a big deal? Mainly because there’s nothing bizarre about it. "

    umm So he obviously finds nothing bizarre in the fact that I used to sleep over 23hrs per day and just couldnt stay awake even to eat a full meal.

    You know what is very scary about this. Is that this guy is a health professional and would now be pushing his made up ideas onto his ME/CFS patients. It never fails to amaze me just how unprofessional professionals can become when they get a new idea into their heads.

    Is there some way we can stop professionals from publishing very unprofessional false stuff about illnesses?

    This guy is almost as bad as the nutritionist I once had who told me that ME/CFS is cured by not watching TV.
     
    Mary, PennyIA, Hutan and 5 others like this.
  4. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,154
    Likes:
    17,898
    I wonder if there's anyone here from the local area for this publication who could have a gentle word in the ear of both the editor of the publication and the writer of the piece.

    I get the feeling from reading the piece that the physio who wrote it is simply out of his depth and trying to be helpful. It needs to be pointed out to him that unscientific speculation beyond his field of expertise can be harmful.
     
  5. AndyPR

    AndyPR Senior Member

    Seems more like an infomercial to me than anything else, the physio guy spotted an opportunity to plug his business. Shame we can't comment on the article itself.
     
    actup, Luther Blissett, erin and 6 others like this.
  6. hellytheelephant

    hellytheelephant Senior Member

    Messages:
    1,011
    Likes:
    5,008
    S W England
    ..I will refrain from repeating the bad language that is ricocheting around my head.
    It's unbelievably ill informed- as if the writer of the article has never met anyone with ME, or read anything about it.

    Eat sugar for energy and moderate exercise- well DOH! That is exactly what most of us did for years before being properly diagnosed/informed, pushing ourselves beyond what we could do and surviving on coffee and sugary snacks...and that is exactly why we are so flippin' sick for so long!!!!!

    I am beginning to hate the term CFS which seems to translate to the ill-informed as 'really tired':bang-head:
     
    Mary, Luther Blissett, erin and 3 others like this.
  7. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,154
    Likes:
    17,898
    I think you're right, Andy, I hadn't thought it through from the perspective of infomercial ie touting for business. Makes it even worse.
     
  8. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,154
    Likes:
    17,898
    I've just taken my own advice and e-mailed the editor of the publication concerned as follows:

    'Dear Ciara Moynihan,

    I am writing to you to express serious concern about the advice given in the article by Andrew O'Brian 'Gentle steps towards beating chronic fatigue'.

    I am a sufferer from Myalgic Encephalitis (ME), sometimes called chronic fatigue syndrome which is recognised by the WHO as a neurological disease. It is a severely debilitating illness leaving many sufferers housebound or bed bound for years. I have been ill for 26 years.

    Recent research that Andrew O'Brian mentions does indeed indicate a down-regulation of the energy production system in cells in ME/CFS sufferers which has some parallels with, but is not the same as, hibernation. This is a small preliminary study with some promising findings that may lead to better understanding of the condition, along with many other studies showing changes in muscle, heart, brain and other systems of the body, and in the body's response to exercise. It is a complex, as yet only partially understood serious physical illness. The researchers in this study Andrew O'Brien cites specifically rule out using their research findings to draw any conclusions about diet or supplements.

    It has also recently been revealed that a large study of 'graded exercise therapy' which had claimed modest improvements in patients, had been grossly exaggerated by the researchers, and data released under the freedom of information act reveal that there was in fact no benefit from this treatment. It is well known among patients that trying to exercise your way to health if you have ME/CFS is damaging. This is backed up by cardiopulmonary and other biomedical testing.

    It is therefore highly irresponsible for someone with some claims to medical knowledge to advise a particular dietary or exercise regime as Mr O'Brien does in this article. There is no evidence that a high carbohydrate/sugar diet or any exercise regime is useful for ME/CFS and, as I have said, any exercise, however gentle can be highly detrimental.
    Mr O'Brien may protest that he was only recommending a healthy eating and gentle exercise regime that is good for anybody, ill or not, but unfortunately what is good for healthy people may not be good for sufferers from a particular condition.

    You may be interested in this article published yesterday:
    https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

    I also object strongly to the gratuitous introduction of the highly insulting term 'yuppie flu' to introduce the article. Why remind your readers of a highly insulting term that has contributed to sigma and denigration of sufferers. Placing this alongside the incorrect advice that sufferers can be helped with diet and exercise not only misleads sufferers, but adds to the public's perception that the disease can be overcome if only people would try a bit harder. This sort of attitude has led to many sufferers being misunderstood and treated badly by family, friends and medical practitioners. This offence is compounded by the highly misleading headline you have used suggesting exercise can cure CFS. This is simply and completely wrong.

    I look forward to hearing what action you propose to take to correct the misinformation in this article.'

    I'll let you know if I get a response.
     
    Art Vandelay, actup, mango and 28 others like this.
  9. AndyPR

    AndyPR Senior Member

    @trishrhymes , Goddess of letter and email writing!! Seriously, great job. I wish my brain fog would allow me to come up with that sort of length of writing more easily than it does.
     
  10. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,154
    Likes:
    17,898
    Thanks, Andy, that means a lot. I feel so helpless, it's nice to at least pretend to be doing something useful.

    I suspect I'm heading for a crash - even less sleep than usual feeling hyped up by all this mental activity and the excitement of the PACE developments. My brain will probably descend into a fog tomorrow. Sigh!!! Back to lying in bed listening to Harry Potter CD's...
     
    Luther Blissett, leela and AndyPR like this.
  11. Mij

    Mij Senior Member

    Messages:
    2,329
    Likes:
    5,078
    @trishrhymes I'm confused, did Ciara write this article based on her own opinions, or was it written with Andrew O'Brien's input/approval?

    Is this the guy? Why don't you also send your letter to Andrew O'Brien's clinic( referring to this article)?
    http://www.wannarun.ie/about
     
    Luther Blissett and flybro like this.
  12. Hilary

    Hilary Senior Member

    Messages:
    190
    Likes:
    1,064
    UK
    Excellent letter @trishrhymes . It never fails to astonish me just how many people think they're qualified to offer advice on the management (or treatment even) of a condition which they have presumably never experienced, never had any training in and about which they quite clearly know very little indeed.... :bang-head:
     
    actup, ballard, Mary and 6 others like this.
  13. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,154
    Likes:
    17,898
    Hi Mij, As I understand it the article was written by Andrew O'Brien. Ciara Moynihan is the editor of the publication. Thanks for the suggestion of sending it to Mr O'Brien as well, I shall do so.

    Edit: Done, here's what I wrote:

    Dear Andrew O'Brien,

    This is a copy of an e-mail I sent to the publisher of your article. As you see I am concerned that you do not fully understand ME/CFS or the treatment suitable for this complex condition.

    I do not question that your article is well meaning and you believe you were giving sensible advice, however, as I explain, such advice is incorrect and can cause serious damage.

    Please do get in touch with me if you have any questions or would like help writing a further article to correct the misleading and incorrect advice you gave.
     
    Last edited: Sep 22, 2016
    Missense, mango, actup and 16 others like this.
  14. MEMum

    MEMum Senior Member

    Messages:
    436
    Likes:
    2,231
    Wish i could do multiple likes on your emails @trishrhymes they are brilliant!
     
  15. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,154
    Likes:
    17,898
    Takes bow, falls over, crawls back into bed (metaphorically speaking).

    Thank you.
     
  16. leela

    leela Slow But Hopeful

    Messages:
    3,224
    Likes:
    7,243
    Couchland, USA
    Geebus, what a load of crap. I noped out of there when I saw it literally opens with "Yuppie Flu". Why keep trotting that bigotry out even if acknowledging it is derogatory? I've said it before and I'll say it again: would you write about black people as "formerly referred to derogatorily as "n***ers"? No, you would not, you'd recognise what a disservice you do to all people by dredging up ancient disgusting slander. I thought the era of bandying that phrase about had come to end!

    It then goes on in its second sentence to state "the fact that sufferers tend to be females aged between 20 and 45 with office jobs and stressed lifestyles",
    which is most definitely not a fact, and though the author states this in the guise of debunking it, he has now succeeded in confirming bias to anyone who holds these beliefs about "chronic fatigue" and who then will not read any further.

    Not that there is much sense in reading any further, because the whole thing appears to be someone with little to no understanding using the press release of the Naviaux study to promote his own services.

    Why does this junk keep getting published? Why has ME become the medical scapegoat of the century? Sick of it!

    OK rant over, sorry :(
     
    Hilary, actup, Mij and 7 others like this.
  17. Luther Blissett

    Luther Blissett Senior Member

    Messages:
    724
    Likes:
    4,114
    Yorkshire, England
    :cry: In tribute to you excellent e-mail, @trishrhymes , I dedicate this meme to you.

    [​IMG]

    :angel::hug:
     
    Valentijn, mango, leela and 3 others like this.
  18. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,154
    Likes:
    17,898
    The old brain is slowing down. Took me ages to get koalified / qualified!

    Thank you!
     
    AndyPR, Mij, Keela Too and 1 other person like this.

See more popular forum discussions.

Share This Page