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USA: Massachusetts ME/CFS & FM Association news

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

  1. Trish

    Trish Moderator Staff Member

    Messages:
    51,883
    Location:
    UK
    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.
     
  2. RedFox

    RedFox Senior Member (Voting Rights)

    Messages:
    1,244
    Location:
    Pennsylvania
    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.
     
    Mij, Medfeb, bobbler and 5 others like this.
  3. 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
    RedFox likes this.
  4. 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.
  5. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Did anyone watch this?
     
  6. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    1,860
  7. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
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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.
     
    Dolphin and RedFox like this.
  8. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    8,204
    "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.
     
    Dolphin, shak8 and Trish like this.
  9. ahimsa

    ahimsa Senior Member (Voting Rights)

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    Location:
    Oregon, USA
    Selected readings from The Long Haul, with Ryan Prior and Cynthia Adinig

    Sunday, January 22, 2023, 4 p.m. EST

    Event is free and will be recorded for later viewing. Register here:

    https://www.massmecfs.org/news-events/66-sunday-conversations/832-sunday-conversations-jan2023
     
  10. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
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    Location:
    Oregon, USA
    Note: Due to professional licensing issues, you must be a Massachusetts resident to attend this group.

    Announcement from The Massachusetts ME/CFS and FM Association:

    Young Adult Support Group for those with ME CFS, FM, Lyme, Long Covid, and Chronic Illness - Feb. 18, 2023


    https://www.massmecfs.org/component/civicrm/?task=civicrm/event/register&reset=1&id=134&cid=

    Saturday, February 18th at 10:30 A.M. ET on Zoom

    This drop-in Virtual Support Group is interactive and provides a safe space for patients to share stories and experiences, ask questions, and offer one another support.

    This class is free for members. There is a $10 suggested donation for those that can afford to contribute. A contribution of $25 or more will include membership for the year.
     
  11. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,617
    Location:
    Oregon, USA
    Here's the next event in the "Sunday Conversations" series:

    "The Broken Mishkan: Performance and Community Conversation with Sara Nesson"

    Sunday, March 19
    4 pm Eastern Time / 1 pm Pacific Time

    Find the time in your timezone here:
    https://www.timeanddate.com/worldcl...n+with+Sara+Nesson&iso=20230319T16&p1=43&ah=1
    Register here:

    https://www.massmecfs.org/component/civicrm/?task=civicrm/event/register&reset=1&id=142
     
  12. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,617
    Location:
    Oregon, USA
    March Newsletter from the Massachusetts ME/CFS and FM Association:

    https://www.massmecfs.org/component/civicrm/?task=civicrm/mailing/view&id=1237&reset=1

    Includes information on their "Sunday Conversations" series (see previous post) and a series of Young Adult Support Group meetings

    Important note about support group meetings: "
    Due to professional licensing requirements, we are only able to offer this program to Massachusetts residents."
     
  13. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,617
    Location:
    Oregon, USA
    Massachusetts ME/CFS and FM Association has posted a recording of the June 18 session of their "Sunday Conversations" series on their YouTube channel.

    "ZOOM through 40 years of ME/CFS with MassME!"

    https://www.youtube.com/watch?v=vyjBFD6AseQ





    One hour long. I have not watched it.
     
    Hutan, Peter Trewhitt, Trish and 2 others like this.
  14. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
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    https://www.massmecfs.org/news-events/66-sunday-conversations/857-sunday-conversations-aug2023

    Join MassME for an August Sunday Conversation! We are looking forward to meeting you on Zoom. Summer is a time for informal gatherings and socializing. Let's get to know one another, and have a chance to ask questions and share experiences!

    After a brief welcome and introduction, we will gather together in small groups for moderated conversations about two topics of interest to our community.

    “Living with chronic illness: How to you find meaning in your life?”
    “Pacing: Personal approaches and what works for you?”

    When you register, you can select which topic that you would like to explore with others. All are welcome - come to learn, share or just listen.

    Based on your previous feedback, we will allow 40-45 minutes for a group discussion on your chosen topic. We'll return to the full group for a brief "de-brief" before signing off.

    This is a live event via Zoom. It will not be recorded.

    Living with Chronic Illness
    Sunday, August 20, 2023
    4 - 5 p.m. Eastern Time

    Register now!

     
    ahimsa, Hutan, shak8 and 1 other person like this.
  15. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,534
    Location:
    Aotearoa New Zealand
    Latest MassME newsletter is out

    17 September - webinar by a Long covid clinician

    28 October - webinar by Ed Yong
    There are dates for their Young Adult Support Group - Massachusetts residents only

    News of a new medical education course
    Also promotion of a fibromyalgia study that looks possibly problematic. Thread here: USA Massachusetts:Spaulding Fibromyalgia study
     
    Jaybee00, ahimsa, Solstice and 4 others like this.
  16. Amw66

    Amw66 Senior Member (Voting Rights)

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    6,263
  17. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,617
    Location:
    Oregon, USA
    Next up in the Sunday Conversations series:

    "What Sociology and the Illness Narratives Can Teach Us About Living with Chronic Illness"


    November 19, 2023
    4:00 pm Eastern Time

    https://www.massmecfs.org/news-events/66-sunday-conversations/868-sunday-conversations-nov2023
    Register here:

    https://www.massmecfs.org/component/civicrm/?task=civicrm/event/register&reset=1&id=167
     
    Solstice, wingate, Hutan and 4 others like this.
  18. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    4,990
    Recording now available:
    https://www.massmecfs.org/news-events/66-sunday-conversations/868-sunday-conversations-nov2023
     
    Hutan, ahimsa, shak8 and 1 other person like this.
  19. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,617
    Location:
    Oregon, USA
    Next up in the Sunday Conversations series:

    "It's Not 'All In Your Head' "

    Multi-Modal Healing with Judy Tsafrir

    Sunday, January 21
    4 PM Eastern Time

    https://www.massmecfs.org/news-events/66-sunday-conversations/874-sunday-conversations-jan2024
     
    Solstice, Peter Trewhitt and Laurie P like this.
  20. Laurie P

    Laurie P Senior Member (Voting Rights)

    Messages:
    174
    Location:
    New England, USA

    I'm extremely disappointed to see the Massachusetts ME/CFS & FM Association giving this person a platform. :banghead:

    Judy Tsafrir, M.D.
    Holistic Adult and Child Psychiatry in Newton, MA
    https://www.judytsafrirmd.com/
     
    Solstice, SNT Gatchaman, Sean and 4 others like this.

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