Cambridgeshire Live article: Cambridge Dad living with ME becomes so exhausted he can't walk downstairs

Discussion in 'General ME/CFS news' started by Wyva, May 23, 2021.

  1. Wyva

    Wyva Senior Member (Voting Rights)

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    https://www.cambridge-news.co.uk/news/health/me-cfs-personal-story-20562798

    Another local article with Dr Mark Harper, chair of the Cambridge ME support group. He seems to be doing a great job at reaching out. The article is quite long and first focuses on his own personal story with ME/CFS, then in the second half the general situation of the disease is mentioned too, as well as the similarity to long covid (discussed by Dr Charles Shepherd).

    Mark Harper, 68, a retired physicist from Cambridgeshire, has shared his experience of living with the condition, which he has had since his 30s.

    "I only shower once or twice per week because I can’t afford the energy. If I have a shower- that’s it. I can’t do anything else for the morning," he says.

    "I can manage 3 or 4 hours a day upright, and the rest of the time I have to rest. And I am one of the less ill people with ME."​

    Dr Mark Harper also talked talked a lot about ME/CFS politics, the current situation of GET and CBT as a treatment for it in the UK, etc in this previous article: https://www.s4me.info/threads/possi...ovid-19-long-covid.14074/page-211#post-343141
     
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  2. Woolie

    Woolie Senior Member

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    Oh no, I'm worried the headline sets this up to be lampooned. Sounds like something from The Onion. "Woman becomes so angry with the internet that she resorts to reading a book"
     
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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    A great article and interview! They've managed to include a lot of information.
     
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  4. Trish

    Trish Moderator Staff Member

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    Funny error - granular fever instead of glandular fever.

    Generally a good article, but a couple of quibbles in the section quoting Charles Shepherd:

    Quotes (with my bolding):

    Why do people keep playing down PEM as fatigue?



    My impression from the bits of research we've seen is that only a minority have significant organ damage. I don't think the numbers are established.
    ____________

    This section about the new NICE guideline is disappointing, as it repeats two aspects of the draft guideline we challenged in our submission, and implies they are still going to be in the final version:
    We provided good evidence that the studies showed flexible incremental activity increase are not helpful, not just fixed increments, and we questioned the continued specifying of CBT as 'supportive' therapy. Both these aspects of the draft were, I think, compromises with the therapists on the committee and not evidence based and need to be scrapped.

    It seems from what Charles is quoted as saying that this change is not going to happen, leading to the serious danger, as we, and I hope others, pointed out, that the same therapists now doing CBT/GET will just keep doing what they are doing, and relabel it flexible activity management and supportive CBT.

    Apart from that, it's a good article!
     
  5. Kitty

    Kitty Senior Member (Voting Rights)

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    It is annoying, but in this case it might just be that it's easier to explain it that way in a news article?
     
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  6. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    I haven't read the article yet, but had the very same impression of this concerning title. On the other hand, it is good to see pwME articles getting out there.
     
  7. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    "Supportive" CBT. This always concerns me. The more zealous amongst these practitioners may expect great things from their therapy. And, you're right, some will just continue insisting this is a curative for ME. Same goes for "flexible incremental exercise." A nice workaround re the guidelines, unfortunately.
     
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  8. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    I think the phrase, "having a credit card with a 200% interest rate", is excellent. Many people can hopefully relate to that as a very problematic situation.
     
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  9. Ariel

    Ariel Senior Member (Voting Rights)

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    Am I the only one who does not really experience "fatigue" at all? I know it's easier to write "fatigue" than something else but I think of the term as a fiction partly created to serve those running eg "fatigue" clinics and CBT/GET.
     
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  10. JemPD

    JemPD Senior Member (Voting Rights)

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    10yrs or so ago he used to call it 'exercise-induced muscle fatigue' which drove me completely bonkers when i kept reading it in articles & on the MEA website.

    No you're not.
    Am i the only one who's sick of saying that i dont feel fatigued, i feel ill. It's a mess, because plenty of people with ME/CFS do experience fatigue i know, but there we are.
     
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  11. rvallee

    rvallee Senior Member (Voting Rights)

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    I did not have any of that serious level of fatigue until years into my ME, I'd say it took about 5-6 years at least, before that it was mostly neurological symptoms, brain fog, PEM, shortness of breath, dizziness, dysautonomia. I did have the normal kind of mild chronic fatigue since my teens, but that's completely different. Even in my first years of illness it simply was not a useful description for anything I was going through. It made me completely brush off this suggestion of "chronic fatigue" at first, simply an invalid framing.

    But yeah fatigue is an optional symptom. That's seriously messed up when it's literally in the name everyone recognizes despite being incorrectly defined.
     
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  12. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    When well, I used to feel tired after several hours of cross country skiing.

    That tiredness in no way resembled this continual burning muscle pain, weakness, constant flu-like experience, pre-syncope, short term memory problems, very frequent GI symptoms, joint aches, unusual headaches, and post-exertional malaise with minor exertion. The fatigue I feel is inextricably linked with all the above symptoms, and more. I would say fatigue, yes, but so very, very much more.
     
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  13. Sisyphus

    Sisyphus Senior Member (Voting Rights)

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    But it’s accurate.
    “Can’t walk downstairs” is the crash state I strive to avoid but know is waiting for me should I cross an invisible threshold, whether voluntarily or buy some basic requirement of life. His comments about standing and showering mirror my experiences perfectly.
    This guy has a real case of ME, SEID, GTFO or whatever we’ll be labelled next.
     
    Last edited: May 24, 2021
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  14. Mithriel

    Mithriel Senior Member (Voting Rights)

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    I don't really experience fatigue even now, it is feeling ill that keeps my from doing things. What I have always had is a sudden stop, either my whole body or parts of it, which can take a few seconds to hours to recover to what I was doing except very occasionally. This is different from the PEM which takes 3 days to appear.

    If I have done far too much because of life circumstances I become very ill with what feels like immune problems. Then there is dysautonomia and POTS which are different again.

    So, yes, I tell my husband I'm feeling a bit tired ....
     
  15. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @Mithriel

    Yes, to sudden stop. I come to a point where I can't do anymore. But in a healthy person's world, I will have done virtually nothing at all.
     
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  16. Woolie

    Woolie Senior Member

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    When I first got sick in the early 90s, I got full testing for other things (before the CFS diagnosis). When the tests came back negative, the registrar in charge of my case says "well, its really difficult to find what's wrong, because your symptoms are nonspecific like fatigue".

    And I replied, "But I never said I had fatigue, I said that I felt like I had a severe flu, which can go on for 2-3 months at a time, so bad that I'm completely bed bound".

    He said "well, you say you can't get out of bed, isn't that the very definition of fatigue?"

    I suppose having your back broken is also fatigue.
     
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  17. Michelle

    Michelle Senior Member (Voting Rights)

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    It's like saying the flu is merely a case of acute fatigue.
     
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  18. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @Woolie @Michelle

    General public health info on places like weather channels describes how to differentiate colds from flu. How ridiculous it would be to say one symptom of flu is the inability to get out of bed.
     
  19. bobbler

    bobbler Senior Member (Voting Rights)

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    In the sense it’s utter exhaustion

    I think people think that you can push thru it but they don’t get there is a point where you actually not only can’t move but are knocked out eventually even if you did so - and if you keep eg trying to get up for work then your alarm has to get earlier and earlier because it’s takes hours to force and cajole said body up shh no d awake , except you then realise that the less sleep from doing so means you are in a can’t win

    this is important because those with fatigue can do something vs eg if you muscle had snapped . For us we then can’t eg eat our dinner later. Literally.

    I think people are led to believe that they could keep cajoling us through each task not that if we use it early in the day because someone ‘showed us’ look you can go up those stairs then literally the other more essential stuff CANT get done. If they push to force that then it’s four days of doing nothing being out of it later.

    it’s that acceptance of ‘can’t’ that seems to be hinging on people who want to call it fatigue because they think it is’ vs what we mean in PEM ie when it accumulates enough to crash us in particular. They are different worlds.

    I’m finding it very difficult to feel sure I’m properly heard on what it involves because even when I communicate it perfectly THAT is something people secretly hold on to like some caveat they rarely talk out

    and yes it comes from the physio/ot side if things completely misunderstanding BOTH concepts I think. Simply because they simplify something that’s different to the ‘can you lift that arm and I’ll measure the angle it can make’ type thing they think they get from eg stroke rehab (which I also don’t fully understand). I suspect pseudo-measuring as a comfort has a lot to answer for in some of this
     
  20. bobbler

    bobbler Senior Member (Voting Rights)

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    Yes and they don’t seem to get there us fatiguability of body parts and talking and I’m pretty sure collapsing and OI worsening is more like fariguability due to being ‘more ill’
     
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