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USA: Massachusetts ME/CFS & FM Association news

Discussion in 'News from organisations' started by Jaybee00, Oct 22, 2021.

  1. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Last edited by a moderator: Oct 23, 2021
    Binkie4, Lilas, Forbin and 10 others like this.
  2. Hutan

    Hutan Moderator Staff Member

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    500 people registered for the event. Vicky Whittemore helped the group organise it - we are lucky to have her as an ally in the NIH. She mentioned a good friend in the Mass ME/CFS & FM - I think it's likely that that friendship has informed Vicky's attitude towards ME/CFS.

    The webinar was well done, well managed with a chat and questions able to be submitted live, and with 10 minute breaks between speakers. However, for such a long event, there wasn't much time for technical content, with the 15 minute presentations being a bit like trying to drink from a water hydrant.

    Mass ME/CFS
    Claims to the oldest patient organisation in the US, established in 1985. It has been staffed entirely by volunteers (35, providing the equivalent of 2.5 full time people, although they are just now getting a part-time admin assistant. Their support groups are run entirely online, and they have moved to more structured events run by professionals. They have tens of thousands of visitors to their website each year, and they run a help line and provide individual support. They have 300 members.

    They would like to get grants but don't really know how to. They have an Artshare programme that has been very popular that they are expanding - I have no more information on that.

    I'm going to start a new thread on the webinar content, so as to not risk this thread going off-topic.
    Here:
    Webinar: Massachusetts ME/CFS & FM research update - 23 October 2021
     
    Last edited: Oct 25, 2021
    RedFox, Forbin, cfsandmore and 7 others like this.
  3. Hutan

    Hutan Moderator Staff Member

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    "On Tuesday, December 14, from 5-6:30pm we are launching a new monthly zoom discussion group entitled: Looking at How ME/CFS Research Might Apply to our Care."

    Sounds like an interesting and potentially useful approach to discuss a paper alongside the Health Rising item on it. I'm not completely sure about using a paper that is just theories for this though - there will be a lot of assumptions from references to unpack before getting to the 'possible options we might explore with our own healthcare providers'. Hopefully the necessary level of skepticism will be applied.

    December 14th, 2021 5:00 PM
    https://www.massmecfs.org/index.php?option=com_civicrm&task=civicrm/event/info&id=82&reset=1
     
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  4. Hutan

    Hutan Moderator Staff Member

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    Last edited: Nov 26, 2021
    Peter Trewhitt and Trish like this.
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    https://www.massmecfs.org/news-even...ovid-researchers-at-umass-chan-medical-school
     
    cfsandmore, Hutan, Laurie P and 9 others like this.
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Youtube

    A Whole-Person Health Approach to ME/CFS: Lessons for Post-COVID Conditions | Full Event

    https://www.youtube.com/watch?v=3iekf4XaRo0


     
    Hutan likes this.
  7. cfsandmore

    cfsandmore Senior Member (Voting Rights)

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    "Functional medicine is a form of alternative medicine that encompasses a number of unproven and disproven methods and treatments.

    ...It has been described as pseudoscience,[5] quackery,[6] and at its essence a rebranding of complementary and alternative medicine.[6]

    In the United States, functional medicine practices have been ruled ineligible for course credits by the American Academy of Family Physicians because of concerns they may be harmful."

    https://en.wikipedia.org/wiki/Functional_medicine
     
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  8. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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  9. shak8

    shak8 Senior Member (Voting Rights)

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    Making a general statement here. There's a big contingent of American woo in advocacy organizations and even some university research departments.

    The dissatisfaction with the way the medical establishment 'operated' 20 years ago or so, or the limits of what medicine knows and can do, led to dissatisfaction and search for "better medicine" and this resulted in complementary/alternative and total woo acceptance that has invaded or been tolerated in clinical situations (the customer is always right).

    When there is no evidence of efficacy, woo-sham needs to be called out for what is: worthless. But that would offend.
     
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  10. rvallee

    rvallee Senior Member (Voting Rights)

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    Ironically, I keep seeing that the only doctors who even bother to help with Long Covid are functional doctors.

    So it may be useless and mostly quackery, but what does it say about medicine that so many people still find it more useful than medicine, because of all the gaslighting and lying?

    It's actually hard to be this bad, to be worse than useless. No wonder the alternative medicine industry is that big.
     
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  11. Sean

    Sean Moderator Staff Member

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    New patients are typically uninformed and desperate, and that makes them easy pickings for the incompetent and the unscrupulous.
     
  12. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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  13. BrightCandle

    BrightCandle Senior Member (Voting Rights)

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    At this point if you are calling Long Covid "emerging" you just ignored 2 years and 8 months of really vast numbers of disabled people appearing, you can hardly consider yourself any form of expert if you think this is emerging at this point, that horse bolted over 2 years ago. Just as the pandemic is firmly ongoing so is Long Covid. All the research still points to the biggest cohort of Long haulers meeting the Canadian consensus for ME/CFS and many more are likely developing it. You have to have been hiding under a rock never reading any news to not have known about Long Covid for years at this stage and to have ignored all the early research from 2020 that showed the same known biomarkers.
     
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  14. Mij

    Mij Senior Member (Voting Rights)

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  15. Trish

    Trish Moderator Staff Member

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    We can't be certain of that yet, I think.

    I suspect he's thinking on a longer timescale. In disease terms, it's newly emerged compared with almost all other diseases.
     
  16. rvallee

    rvallee Senior Member (Voting Rights)

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    This framing of a "parallel pandemic" has been growing a bit lately and it's so damn weird. Like labeling the flooding after a storm as a separate event from the storm itself. This only serves to create a false separation between the consequences of maximizing the spread of COVID.
     
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  17. Ariel

    Ariel Senior Member (Voting Rights)

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    It's so depressing because they have been thinking about LC and disability so little that they need a whole separate concept and talk of a "parallel pandemic" to discuss what has been happening all along and everyone refuses to acknowledge - any outcome other than death or everything being (seemingly) fine.

    As long as they get there in the end I'd feel better, but I'm not sure there is a shift in understanding just yet.
     
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  18. chrisb

    chrisb Senior Member (Voting Rights)

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    Hm.

    Parallels.

    So, is there no possibility of convergence?
     
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  19. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Maybe in Non-Euclidean medicine?
     
  20. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    MECFS is diagnosed based on symptoms. If you meet the symptoms criteria (for 6 months), then you have disease. MECFS is agnostic as to the trigger.
     

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