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MSN article: "CDC Recognition of Chronic Fatigue Syndrome Paves the Way for a Cure"

Discussion in 'General ME/CFS news' started by Andy, Dec 20, 2017.

  1. Andy

    Andy Committee Member

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    21,956
    Location:
    Hampshire, UK
    Some good, some bad.
    https://www.msn.com/en-us/news/medi...ic-fatigue-syndrome-paves-the-way-for-a-cure/
     
    Barry, Webdog, Inara and 9 others like this.
  2. Mij

    Mij Senior Member (Voting Rights)

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    ScottTriGuy, Inara, EzzieD and 5 others like this.
  3. BurnA

    BurnA Senior Member (Voting Rights)

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    Despite the fact the article quotes Holloday "at the very least call it chronic fatigue syndrome", somehow the author can't even do that.
     
  4. EzzieD

    EzzieD Senior Member (Voting Rights)

    Messages:
    547
    Location:
    UK
    For some reason, I can't read it on the MSN website - I just get thrown to the site's front page instead of the article (could be because I have so many script-blockers and suchlike), but the article seems to have been taken from the New York Observer, in case anyone else has problems seeing it on MSN: http://observer.com/2017/12/cdc-recognition-of-chronic-fatigue-syndrome-paves-the-way-for-a-cure/

    Weirdly uneven article - the author starts off continually calling it 'chronic fatigue', and makes the extraordinary claim that it "shares symptoms with bipolar disorder and schizophrenia" - huh? Then the paragraphs with Dr Holladay are more sensible and accurate, but then it goes back to nonsense again, especially this bit:
    Whaaaat?? Little to no physical symptoms?? What rock has that author been living under? Yikes. o_O
     
    Last edited: Dec 20, 2017
  5. Allele

    Allele Senior Member (Voting Rights)

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    Geepers. It's like Inspirobot wrote it.
     
  6. EzzieD

    EzzieD Senior Member (Voting Rights)

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    Location:
    UK
    I truly wonder how such a completely erroneous (except for the bit with Dr Holladay) article was allowed to be uncritically published? Claiming that ME shares symptoms with bipolar and schizophrenia and that it displays little to no physical symptoms is so jaw-droppingly wrong that it's possibly the wrongest, and strangest, reporting of ME I've seen. The author seems to know nothing at all about the illness and it's like she was just making stuff up as she went along.
     
    ahimsa, Skycloud, MEMarge and 11 others like this.
  7. Allele

    Allele Senior Member (Voting Rights)

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    Who with more than one braincell volunteers to write a letter to MSN/Observer/the author?
     
    ahimsa, Joh, EzzieD and 3 others like this.
  8. EzzieD

    EzzieD Senior Member (Voting Rights)

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    I myself unfortunately don't have the necessary brain cells, but I've finally had a chance to watch the above-mentioned video and it's very good, Dr Holladay does seem to know his stuff re ME. I hadn't heard of him before and enjoyed his talk. It's just a pity the author of the article didn't watch it; she would have learned about the biology of ME and how it's not a 'baffling condition that contradicts itself by showing little to no physical symptoms' (LOL one of the silliest things I've ever read about this illness)!
     
    ahimsa, Webdog, Trish and 3 others like this.
  9. Webdog

    Webdog Senior Member (Voting Rights)

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    I didn't have the brain cells to watch the entire video, but I did listen to it.

    Found the part about viruses fascinating. Particularly the description of enteroviruses spreading to the heart (myocarditis) and brain. This is what I strongly suspect caused my onset.
     
    Trish, ScottTriGuy and EzzieD like this.
  10. Webdog

    Webdog Senior Member (Voting Rights)

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    One part of the video I found disheartening was Dr. Holladay's discussion of the permanent damage of ME/CFS. Although the cognitive damage is quite apparent to me after decades of illness and shows up vividly in neurocognitive testing, one always hopes that treatment can one day reverse most of the damage.

    Holladay pretty much crushes that hope. :(

    It's about as disheartening as reading "Prognosis of ME/CFS" by David S. Bell, MD, which destroys the myth that longterm sufferers with adolescent onset can recover.
     
    Inara likes this.
  11. MeSci

    MeSci Senior Member (Voting Rights)

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    I can't remember what he said, but is it possible that he is/was wrong? I recall brief periods when I felt almost normal, with no permanent damage, but I can't remember the last one.
     
  12. Inara

    Inara Senior Member (Voting Rights)

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    Well, @Webdog, I didn't know that and this crashed some of my hope, too :( I am still so young...

    Ahhh, and here comes new hope, thank you @MeSci :)
     
  13. Mij

    Mij Senior Member (Voting Rights)

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    @Webdog don't lose hope. We are on the right track (finally).

    My citric acid cycle on my OA test was very low and Dr. Davis gives me hope.

    https://www.paloaltoonline.com/news...hlights-new-chronic-fatigue-syndrome-research

    My bolding:

    "Davis and his team introduced electrical impulses to both cells and blood serum (a protein-rich liquid that separates out when blood coagulates), taken from both ME/CFS patients and healthy controls. The patients' serum had a very different response from that of healthy subjects. The cells themselves did not seem to have any defects, only the serum that came from the cells. All of the samples from the ME/CFS patients behaved the same way and all of the healthy controls did not deviate from their cell reactions, he said."

    "But Davis and his team have been testing compounds that seem to switch on the shut-down citric acid cycle. Two substances -- pyruvate and ATP -- have been capable of making the cells function properly again. But much more testing must be done, he said."

    and this:

    "Scientists have some theories about why the metabolic sequence in a ME/CFS patient might turn off. Robert Naviaux, a University of California, San Diego expert in mitochondrial DNA and metabolism who will also speak at the community symposium, theorizes that the switch-off mechanism could be a "danger response." ME/CFS is a metabolic state designed to protect the body during a viral infection, for example, but for some reason it doesn't get turned back on after after the infection has gone".
     
    ahimsa, Inara, Webdog and 4 others like this.
  14. Trish

    Trish Moderator Staff Member

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    I just managed to finish watching the video. Dr Halliday is young doctor who has specialised in infectious diseases, and is fairly new to the ME/CFS field. He has been trained by the Bateman Horne Centre, who, as far as I can tell are very good.

    His talk takes us through an overview of what he has learned so far. I found him an engaging person keen to do the best for his patients, listening carefully, for example to determine what kind of pain they have in order to do the best treatment. It is great to see keen young doctors choosing to specialise in ME.

    What he said mainly fitted closely with what I have managed to pick up over the last couple of years. There were a couple of places where I wondered whether he had it quite clear.

    Firstly, the CPET - he talked about reaching the anaerobic threshold at a lower level than healthy patients, and this being related to problems with energy production, but he seems to have completely missed the key point about the 2 day CPET showing abnormality in recovery, and the relation to PEM. In fact I don't remember him mentioning PEM at all.

    The second thing I noticed was that he was very vague about the neurological findings - partly limited time, partly not his specialism, and partly there is limited information available. What concerned me was that he speculated about lasting damage to the brain without suggesting there was any evidence to back this up.

    The only things about this I remember in my limited reading suggested changes seen were reversible. I hasten to add I'm not a doctor or a brain scientist, so I have no idea whether he was right or wrong.
     
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