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The Emerging Parallels Between ME/CFS and Long Covid, Komaroff talk at the Massachusetts ME/CFS and FM Association, Oct. 22 2022

Discussion in 'News from organisations' started by Jaybee00, Oct 3, 2022.

  1. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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  2. 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.
     
  3. Mij

    Mij Senior Member (Voting Rights)

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    alktipping, Louie41, Ariel and 2 others like this.
  4. 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.
     
  5. 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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  6. 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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  7. chrisb

    chrisb Senior Member (Voting Rights)

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    Hm.

    Parallels.

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

    Jaybee00 Senior Member (Voting Rights)

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    Maybe in Non-Euclidean medicine?
     
  9. 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.
     
  10. Trish

    Trish Moderator Staff Member

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    I understand and agree with that, but I think there are still questions over whether LC may turn out to be biologically a distinct enough subgroup of people who fit ME criteria to end up with different diagnostic tests and treatments. For example the spike protein may be affecting organs like the lungs and brain in ways that ME triggered by other viruses don't have.
     
  11. RedFox

    RedFox Senior Member (Voting Rights)

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    It's not at all wrong for Dr. Komaroff to refer to the connections between ME and LC as "emerging." It's a condition that's less than three years old. That's an eternity for people who are suffering, but not long for science. LC is far newer than most other diseases, which are probably as old as time. There are still only a few studies showing a significant proportion of people with long Covid have ME.
     
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  12. bobbler

    bobbler Senior Member (Voting Rights)

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    and of course that rarely have those with ME been studied before they had it for a number of years in the way LC people have because they are a group who all have a designated point of getting ill, and it is relatively similar [timing] for them all. It might be a case of 'mapping back' some of the ME stuff where our 'early days' stuff is missing once there is a point where the two look approx the same rather than taking someone who had ME for 20yrs and comparing them to someone with LC for 1yr.
     
    Last edited: Oct 24, 2022
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  13. bobbler

    bobbler Senior Member (Voting Rights)

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    I just found this, about post-polio syndrome which I didn't know existed (was thinking about the aftermath of polio epidemics when I searched): https://www.christopherreeve.org/li...f-paralysis/post-polio-syndrome-poliomyelitis

    It's interesting to think that there are indeed already situations where there are some who have 'stages' of recurrence or things wearing out etc.

    I wonder whether this PEM mapping is really key, along with much better symptom histories from patient's mouth instead of 'interpreted' where the detail is lost. We don't know for ME when people get more severe whether it is just virus, bad luck, or ongoign over-exertion for a long time. That's terrible really - because patient's know and can say, they've just had their voice removed from them/aren't believed by most when they make this assessment.

    These could help point towards what is going on with a few clues that might be lightbulb, but also make mapping more possible to other conditions, different progression pathways etc.
     
    RedFox likes this.
  14. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Did anyone watch this?
     
  15. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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  16. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    “Komaroff hoped that Abilify’s manufacturer would pick up the tabs for a large Abilify ME/CFS trial.”

    Nope. Abilify is no longer under patent. However, possible, for Rexulti and Vraylar.
     
    RedFox likes this.
  17. Mij

    Mij Senior Member (Voting Rights)

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    "Komaroff listed only 3 things found in ME/CFS (ion channelopathy, exhausted NK/T-cells, craniocervical instability) that have not been found yet in long COVID – perhaps for lack of looking".

    Does anyone have a figure on how many people diagnosed with ME had craniocervical instability? n=3 was my last count.
     
    shak8 and Trish like this.

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