Tinu, to random
@Tinu@mastodon.social avatar

FOR THE FIRST TIME IN A YEAR I BOTH SAT IN THE FLOOR

AND GOT UP OFF THE FLOOR WITHOUT ASSISTANCE!

APPLAUSE PLEASE!

#LongCOVID
#MyalgicEncephalomyelitis

Private
IrishMECFSAssociation,

2/

A few details from the Irish ME/CFS Association meeting with Dr Weir in Sligo on Saturday, May 13.

It sounds like it was a great success with 49 people being there, possibly the largest attendance of the tour!

Well done to Ruth Flood, the local host, and everyone who helped her (we don't have the names at the moment).

She said there were people there from Sligo, Leitrim, Mayo, Roscommon, Donegal and even Fermanagh.

#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis
@mecfs @cfs

Photo from talk

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

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME @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/

#BlueSunday2023 #TeaPartyforME2023 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME @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"

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

tomkindlon, to cfs
@tomkindlon@disabled.social avatar

Press release:

"#WorldMEDay 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

#WorldMEDay2023 @mecfs @cfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #CFSME #MEeps

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

#May12 #May12th #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS @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/

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME @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.

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

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,

11/

is / Day

&

May is

Please help by retooting this 12-minute documentary which features Whitney Dafoe & others
https://youtube.com/watch?v=9_HwOUiImvw

@mecfs @cfs
@SevereME

IrishMECFSAssociation,

12/
May 12 is International Myalgic Encephalomyelitis (ME) Day (and May is ME Awareness Month) You can help by retooting this (well-made) video.

(3 minutes)
https://www.youtube.com/watch?v=IOflARSgNnE

Day #12
#MyalgicE #MyalgicEncephalomyelitis #May12 #May12th #WorldMEDay2023 #WorldMEday #MEAwarenessDay
@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,

14/

(2 minutes)
"How does it feel to live with ME/CFS? Patients describe what it's like"

May is ME Awareness Month.
You can help raise awareness and understanding by retooting this video

https://www.youtube.com/watch?v=1kEBGfQ1DhM

Day 14
#MyalgicE #MyalgicEncephalomyelitis

@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,

16/

May is #MEcfs awareness month.

Please help by retooting this extract from a Golden Girls episode on #CFS
https://www.youtube.com/watch?v=963WCmb2_h4

(part 1 of 2)

Day 16
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs @cfs

IrishMECFSAssociation, (edited ) to mecfs

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

@mecfs @cfs

IrishMECFSAssociation, (edited )

12/

May 12 is International Myalgic Encephalomyelitis (ME) Day (and May is ME Awareness Month)

You can help by retooting this image.

Day 12

#MyalgicE #May12 #May12th #MyalgicEncephalomyelitis #MEAwarenessDay #MillionsMissing @mecfs @cfs

IrishMECFSAssociation,

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

You can help by retooting this image.

Day #13

#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs @cfs

IrishMECFSAssociation,

14/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by retooting this image.

Day 14

#MyalgicEncephalomyelitis #MyalgicE
@mecfs @cfs

IrishMECFSAssociation,

15/

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

You can help by retooting this image.

Day 15

#MyalgicE #MyalgicEncephalomyelitis

@mecfs @cfs

IrishMECFSAssociation,

16/

May is #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome Awareness Month.

You can help by retooting this image.

Day #16

@mecfs @cfs #MEcfs #CFS #MyalgicE #PwME #CFSME #MEeps

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