tomkindlon, to cfs
@tomkindlon@disabled.social avatar

Somebody said they were disappointed that there was no meeting with Dr Weir (organised by
@IrishMECFSAssociation ) near them.

Here is my reply for what it is worth

Also here:
https://www.facebook.com/TomKindlonMECFS/posts/pfbid02NW16AAaoLpgCHKkSM18uuLBr3GiGE686LWKsca1eGQoyZXLGbev4b8giGE2Ys1cNl

@mecfs @cfs

tomkindlon, to cfs
@tomkindlon@disabled.social avatar
tomkindlon,
@tomkindlon@disabled.social avatar

2/ Another photo from our little tea party in aid of
@IrishMECFSAssociation * today https://idonate.ie/fundraiser/BlueSunday2023

*other ME charities in other countries are available and taking part. See: https://the-slow-lane.com/donation-pages/

@mecfs @cfs

tomkindlon, to cfs
@tomkindlon@disabled.social avatar
tomkindlon, to cfs
@tomkindlon@disabled.social avatar

New US research:
"Proteomics & cytokine analyses distinguish myalgic encephalomyelitis/chronic fatigue syndrome cases from controls"

Free:
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-023-04179-3

"Significant correlations between clinical data & protein levels suggest roles of particular proteins & pathways in the disease"

@mecfs @cfs

tomkindlon, to cfs
@tomkindlon@disabled.social avatar

Press release:

" raises awareness of devastating symptom impacting millions post-COVID: 22 organizations from around the world unite to promote awareness of ME — the disease where pushing harder can make you sicker"

https://solvecfs.org/wp-content/uploads/2023/04/World-ME-Day-2023-Solve-press-release.pdf

@mecfs @cfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Nice to see this from the prestigious US CDC is again recognising ME/CFS International Awareness Day with its own page & this which I think is a new initiative for them:
"On May 12, 2023, CDC will “light up” its Atlanta campus in blue in recognition of ME/CFS International Awareness Day"
https://cdc.gov/me-cfs/resources/awarenessday.html

The page was also linked in the weekly email update from the CDC which also tweeted about the day

@mecfs

IrishMECFSAssociation, to cfs

Another photo from our free event with Dr William Weir in Dublin on Wednesday.

We have arranged for him to give more talks in Cork, Limerick, Galway & Sligo in the coming days. Details here:
https://forums.phoenixrising.me/blog-articles/dr-weirs-5-free-irish-me-cfs-talks-in-cork-dublin-galway-limerick-sligo-may-2023.3292/

@MEcfs @cfs

IrishMECFSAssociation, to cfs

Ruth Flood @roothflud contacted the Sligo Champion as did we in advance of the Dr Weir talks.
This led to this piece in this week's paper.

Also one of our members, Teresa, has been interviewed and should feature in next week's edition.
Thanks very much to her for stepping up to tell her story.

@mecfs @cfs

IrishMECFSAssociation, to cfs

From someone who attended the Dublin meeting:

"My message to other sufferers:

If you want to meet a doctor who understands ME, don’t miss this opportunity to meet Dr Weir in your area.

His opinion on GRADED EXERCISE & CBT is priceless"

@mecfs @cfs

tomkindlon, to cfs
@tomkindlon@disabled.social avatar

After organising ME/CFS meetings for the @IrishMECFSAssociation since 1996, I attended my first one in person last night! Here I am (in mask) with my mum, Vera, & Dr William Weir.

I can’t give a proper report as I came just for the chat part at the end (which I enjoyed) but a recording will be put on YouTube.

We have arranged for him to give more talks in Cork/Limerick/Galway/Sligo in the coming days. Details here:
https://bit.ly/3LPvfL8
@mecfs @cfs

tomkindlon,
@tomkindlon@disabled.social avatar

2/

Me having a lie down while waiting for the question-and-answer session of the Irish ME/CFS Association Dublin event to end (I could still hear everything) so I could sit up (mainly with my feet up) for the chat session of the event. That’s one of my wheelchairs.


@IrishMECFSAssociation @mecfs @cfs

IrishMECFSAssociation, to mecfs

Dr Weir sent this to us on Sunday and said it might be of interest to the people coming to his talks this week (in Dublin, Cork, Limerick, Galway & Sligo) so people know his background and why he is interested in ME (and ).

Event details here:
https://forums.phoenixrising.me/blog-articles/dr-weirs-5-free-irish-me-cfs-talks-in-cork-dublin-galway-limerick-sligo-may-2023.3292/

@mecfs @cfs

1/

IrishMECFSAssociation, to mecfs

The People group of newspapers would like to interview a local person about their story living with ME/CFS, along with Dr William Weir. Family members such as partners or parents could also be suitable.

We have some tips we could share with anyone about the sort of questions that tend to be asked e.g. how it affects your life, your symptoms, etc.

Please let us know if you might be interested.

@mecfs @cfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

I'm one of millions missing from our lives due to Myalgic Encephalomyelitis, each with their own challenges and losses.

Unlike Covid lockdowns, the lockdowns we have dealt with for years due to continue


@mecfs @cfs

IrishMECFSAssociation, to longcovid

Saturday, May 20:
Caregiver Support Call (for caregivers of people with ME (#MyalgicEncephalomeylitis), #LongCovid and Associated Conditions)

3:30 PM EDT/8:30 PM GB & Ireland
Find the time in your time zone here:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=CAREGIVER+SUPPORT+CALL&iso=20230520T1530&p1=179&ah=1

We welcome caregivers of people with chronic diseases such as ME, @longcovid, #MCAS, etc. to join our calls to connect with and support each other.
https://www.meaction.net/event/me-caregiver-support-call/2023-05-20/

#ChronicFatigueSyndrome #MEcfs #CFS #SevereME @severeme #SevereCFS #VerySevereME

IrishMECFSAssociation, (edited ) to mecfs

May is Myalgic Encephalomyelitis (ME) Awareness Month.

You can help by liking and/or retooting this video. This 2017 TED talk features @jenbrea.

https://youtu.be/Fb3yp4uJhq0

@mecfs @cfs

Day #1

IrishMECFSAssociation,

7/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by retooting this video.

It's been approved for continuing medical education in the US

https://youtu.be/RC9TjgE_PlU

Day #7

@mecfs @cfs

IrishMECFSAssociation,

8/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this video. It was made by a woman, Laurel, with severe ME

Living with Severe ME
(5 minutes 13 seconds)
https://youtu.be/LvweCk44WHs

Day #8

#SevereME #SevereCFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #CFSME @mecfs @cfs

IrishMECFSAssociation,

9/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by retooting this documentary, "Mom Needs to Lie Down".

It's a short Canadian film made in 2014. (11 minutes 25 seconds)

https://www.youtube.com/watch?v=EvrU-ciEFcM&feature=youtu.be

Day #9

@mecfs @cfs

IrishMECFSAssociation,

10/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by retweeting and/or liking this documentary, "Invisible".

It's a 60-minute documentary made in 2009 (but is timeless) [Skip forward to 14:50 to go to the start of "Invisible" proper]

http://cctv.org/watch-tv/programs/invisible-vermont

Day

@mecfs @cfs

IrishMECFSAssociation,

13/
This is a short (78-second) video about postexertional malaise in ME/CFS.

It uses the battery analogy, but also highlights the effects of payback i.e. the unusual results of exertion in ME. There is no sound.

May is .

You can help raise awareness and understanding by retweeting and/or liking this video
https://www.youtube.com/watch?v=THlRW_YGZmE

Day 13

@mecfs @cfs

IrishMECFSAssociation,

15/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by retooting this 7-minute @abrokenbattery
video, "What is ME? ( aka )".

https://www.youtube.com/watch?v=VKPdgz612nU

Day 15
@mecfs @cfs

IrishMECFSAssociation, (edited ) to mecfs

🧵
May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by liking and/or retooting this image.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MEeps @mecfs @cfs #Day1

IrishMECFSAssociation,

7/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by retooting this image.

Day #7


@mecfs @cfs

IrishMECFSAssociation,

8/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by retooting this image.

Day #8


@mecfs @cfs

IrishMECFSAssociation,

11/

May is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Month, with May 12 being International ME/CFS Day.

You can help by retooting this image.

Day

@mecfs @cfs

IrishMECFSAssociation,

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by retooting this image.

Day

@mecfs @cfs

  • All
  • Subscribed
  • Moderated
  • Favorites
  • JUstTest
  • mdbf
  • ngwrru68w68
  • tester
  • magazineikmin
  • thenastyranch
  • rosin
  • khanakhh
  • InstantRegret
  • Youngstown
  • slotface
  • Durango
  • kavyap
  • DreamBathrooms
  • provamag3
  • tacticalgear
  • osvaldo12
  • normalnudes
  • cubers
  • cisconetworking
  • everett
  • GTA5RPClips
  • ethstaker
  • Leos
  • anitta
  • modclub
  • megavids
  • lostlight
  • All magazines