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Article series in Guardian, June 2021: The pain that can't be seen. (chronic pain, Long Covid, ME/CFS)

Discussion in 'General ME/CFS news' started by Dx Revision Watch, Jun 28, 2021.

  1. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  2. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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  3. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Ah! I see I've forgotten to put the link at the top. I'll edit it in, thanks, MSEsperanza.
     
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  4. Trish

    Trish Moderator Staff Member

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    I notice they quote as an 'expert' on ME/CFS Dr Raymond Perrin, and refer to him as a neuroscientist researching a treatment for long covid.
    https://www.londonneurology.com/dt_doctors/raymond-perrin#
    They seem not to have noticed that he is an osteopath who uses his unproven weird massage technique to 'treat' ME/CFS and somehow managed to get a PhD in his technique from a UK university. A bit like Parker got a PhD for LP. This gives their quackery an undeserved aura of respectability.
     
  5. rvallee

    rvallee Senior Member (Voting Rights)

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    That's exactly the kind of attitude that keeps them oblivious to it. Just like the bystander phone effect, everyone is out there saying "someone should do something" and they go right back to doing nothing, or sometimes angrily defend a broken status quo that lead us there, or just hustle at the old old useless thing invented instead of doing something, it works just like magic, because the house always wins, they could drink beer all day and have the exact same results.

    Thoughts and prayers, basically. Question is how do you make people do their job when there is no mechanism to do so and the whole system is built to prevent it from happening? More thoughts and prayers, I guess. Shirley, someone will do something some day, perhaps, in the very distant future. In the meantime? Nothing anyone can do, so sad, let's just run through pointless perpetual motions instead. That oughta work. It never has, but this time it will, Shirley, because, you see, someone out there who can make this happen is hoping someone else will do it, and in the end isn't this all that matters? They signal virtue, and it makes them feel good, because someone somewhere somewhen will do something. Not them, though. Nope. Someone.
     
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  6. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Thank you @Dx Revision Watch

    Good article about pain.

    But what also stood out as a concern for me is the fact quacks and charlatans are gleefully "sharpening their knives", and in some cases literally sharpening their knives in order to "treat" more desperate ill people. Long COVID is the motherload for them.

    It would be very good if there was some comeuppance for these people, but it's rare. They leave many, even more physically and
    financially broken in their wake.
     
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  7. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Mmm. Only had a quick search but can't find a trial protocol or anything about this apparently imminent trial out of Manchester University and Salford Royal hospital.


    Perrin's 2005 doctoral thesis:

    http://usir.salford.ac.uk/id/eprint/2150/1/420461.pdf
     
    Last edited: Jun 29, 2021
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  8. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Easily done
     
  9. Wyva

    Wyva Senior Member (Voting Rights)

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    As @MSEsperanza mentioned this article is part of a larger series of articles, titled "The pain that can't be seen".

    Sufferers of chronic pain have long been told it's all in their head. We now know that's not true. This series looks at why doctors are playing catch-up on chronic pain conditions like endometriosis, migraine and more – and what they have to do with long Covid.​

    There's a new article in this series now: Why women are more likely to suffer from long Covid

    It was written by a gynaecologist and a professor specialising in pain research and they are trying to explain the biology of why more women have long covid. There are some parts I'm not sure about. For example, is the association with pre-existing gynaecological pain conditions accurate?

    Conditions including severe period pain, endometriosis and chronic pelvic pain are already associated with an increase in TLR activity, and the presence of Chronic Fatigue Syndrome is highly associated with pre-existing gynaecological pain conditions. Repeated stimulation of the immune system predisposes to chronic pain conditions, and infection with Covid-19 presents a major immune stimulus.​

    https://www.theguardian.com/austral...men-are-more-likely-to-suffer-from-long-covid
     
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  10. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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  11. Hutan

    Hutan Moderator Staff Member

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    From memory, that association came largely from a single flawed US study. I'll post a link if I find it.

    Here's one
    frontiers in Pediatrics: Endometriosis as a Comorbid Condition in Chronic Fatigue Syndrome by Boneva, Unger et al 2019
    A small study, raising questions about selection.

    and another:
    Early menopause and other gynecologic risk indicators for CFS in women, 2015, Boneva, Lin, Unger
    Issues with retrospective self-reporting and selection also.
     
    Last edited: Jun 30, 2021
  12. boolybooly

    boolybooly Senior Member (Voting Rights)

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    I feel very sceptical about this "nociplastic" pain theory. Especially where they say endometriosis is an example of it, that sounds very wrong, I always understood endometriosis to be a very difficult and physically real condition. Am I mistaken?

    The argument that its not in your head but its not really real also is the same argument insurer lobby BPS proponents have tried to use with ME CFS. I strikes me this kind of argument in a legal context allows insurers to claim the condition is one of sensation so treatment can be confined to pain killers and more expensive interventions are unnecessary.

    What empirical experimental evidence is there for this theory?
     
  13. Blueskytoo

    Blueskytoo Senior Member (Voting Rights)

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    Merged thread
    Guardian article -“‘I felt betrayed’: how Covid research could help patients living with chronic fatigue syndrome”

    Pretty decent article in their series about living with invisible pain. Quotes @dave30th amongst others.
     
    Last edited by a moderator: Nov 4, 2021
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  14. Adrian

    Adrian Administrator Staff Member

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  15. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Which of the links above did this reference to "nociplastic" pain come from?
     
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  16. boolybooly

    boolybooly Senior Member (Voting Rights)

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    Sorry, should have been more specific, am not having a great time atm so was being frugal with my degree of effort. I will try a bit harder.

    This was MEEsperanza's link to an article which starts by discussing a US citizen with chronic pain.

    A phrase at the bottom of the title article as follows is almost the title of MEEsperanza's link as she quoted.

    "Sufferers of chronic pain have long been told it’s all in their head. We now know that’s not true."

    The second article links to a collection of Guardian articles on chronic pain and fibromylagia and why women are more likely to suffer from longcovid.

    I am very sceptical about this (not the gender bias, which I accept, the nociplastic pain idea). Even if proven that there were rare neurological conditions which might involve such a process... and I do not recall seeing any credible proof of this, please correct me if I am wrong... it would not mean that all unexplained pain should be considered as being explained by such a condition and I think applying it to endometriosis out of the blue without unequivocal evidence is not appropriate and is suspiciously akin to theories about hysteria and somatisation and constitutes a similar form of projection of denial and dismissal.

    So I do not think this idea, presented as recognising the truth, constitutes the prevailing of enlightenment, more a kind of wolf in sheeps clothing from the usual suspects.

    As I understand it, scientifically and in line with evolutionary theory, there is a more credible perspective on why women experience more difficulty in this regard than men, statistically speaking they have more developed immune systems. Men on the other hand statistically live shorter lives, possibly because they dont along with a few other factors leading to the suppression of immunity and tendency to burn the physiological candle at both ends. It follows that the gender bias in chronic pain may be linked to the activity of the immune system rather than some mysterious tendency to suffer pain due to meaningless misfiring of the nervous system.
     
    Last edited: Jun 30, 2021
  17. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    From your final quote :

    This idea fails logically in the case of endometriosis. If nociplastic pain occurs in conditions in which tissue damage is non-existent or not visible then how can surgeons ever declare that they have found "very severe endometriosis", and what makes that different from surgeons finding "mild endometriosis". Such gradations of severity of the condition could never happen if the condition was invisible. Endometriosis damage is visible - if surgeons look for it and know how to identify it when they see it.

    If endometriosis was not visible then every woman diagnosed with the condition would have the same degree of damage i.e. none.

    I hope that makes logical sense...

    I've read a lot of anecdotes from women being found to have endometriosis which was visible on bowel, bladder, rectum, anus, intestines, kidneys, diaphragm, lungs, in the nose, the ears, and in the brain in which case the idea behind nociplastic pain is dead in the water. It just suggests that a group of people want to do a superficial look into women with pelvic pain and then dismiss them.

    I hope answering my question hasn't wiped you out for the next month. :( :hug:

    Edit : For anyone who wants to actually see endometriosis, or read up on it, this rather dated (but otherwise helpful) website has various videos showing the condition being found during surgery.

    http://endopaedia.info/
     
    Last edited: Jun 30, 2021
  18. boolybooly

    boolybooly Senior Member (Voting Rights)

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    Exactly, doesnt make any sense.

    Thanks for your concern, dont worry not blaming you just making excuses, am avoiding PEM but am stuck with recurring headaches whatever I do which make everything harder. Is a bit frustrating, this one has lasted three days.:grumpy:
     
  19. Kitty

    Kitty Senior Member (Voting Rights)

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    It seems to be part of a series on chronic pain called The Pain that Can't be Seen, which I think started this week.
     
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  20. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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