BeeCeeDee

Mostly homebound pwME, gamer, nerd. He/him.

[Science for ME online forum @s4me_info]

Discover #MECFS, #LongCovid and related news, advocacy and research from w/c 6th May in our News in Brief post.

Find summaries and further reading links for:
News, advocacy and articles
Research news
Crowdfunding
Coming events
Research

#MEAwarenessDay

https://t.co/5oNXlLPj3S

[DecodeME the ME/CFS Study @DecodeMEstudy]

This #WorldMEday, #DecodeME hopes that by building recognition, fostering global cooperation and sharing research findings, we can help accelerate research towards possible diagnostic tests and treatments for #MECFS. #GlobalVoiceForME

[BeeCeeDee @boxingcatdog]

@LBatemanMD @sunsopeningband If a fellow academic raising concerns they have about a research project is "attacking" science then it is no wonder that patient concerns have been and continue to be dismissed so readily.

[Science for ME online forum @s4me_info]

A thread for thirteen #MECFS, #LongCovid and related research papers from w/c 29th April 2024.

Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Inclusion does not equal recommendation.

1/14

[DecodeME the ME/CFS Study @DecodeMEstudy]

With your help, #DecodeME has built the world’s largest data set on ME/CFS.

We are now welcoming data access applications from researchers who wish to use this in studies into ME/CFS and other diseases.

Find out more ➡️ https://t.co/wAx089r2Tn

[Science for ME online forum @s4me_info]

A thread for nine #MECFS, #LongCovid and related research papers from w/c 22nd April 2024.

Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Inclusion does not equal recommendation.

1/10

[Science for ME online forum @s4me_info]

Find ME/CFS, Long Covid and related news, advocacy and research from w/c 22nd April in our latest News in Brief post.

Topics covered this week:
News, advocacy and articles
Research news
Coming events
#MECFS research
& #LongCovid research

https://t.co/Ubcz0d7qgt

[Science for ME online forum @s4me_info]

A thread for thirteen #MECFS, #LongCovid and related research papers from w/c 15th April 2024.

Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Inclusion does not equal recommendation.

1/14

[Science for ME online forum @s4me_info]

Out now, our News in Brief post for w/c 15th April. Headlines and links to further reading for these ME/CFS, Long Covid and related topics:

News, advocacy & media
Research news & commentary
Coming events
#MECFS & related research
& #LongCovid research

https://t.co/YgtDNULtLJ

[davidtuller @davidtuller1]

I spoke earlier today with The Guardian's George Monbiot about his recent scathing column on a "national scandal"--the longstanding mistreatment of those with the illness (or cluster of illnesses) currently known as ME/CFS. Thanks @GeorgeMonbiot!
https://t.co/wGRolU9KQ2

[Science for ME online forum @s4me_info]

A thread for eleven #MECFS, #LongCovid and related research papers from w/c 8th April 2024.

Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Inclusion does not equal recommendation.

1/12

[Science for ME online forum @s4me_info]

Our latest News in Brief post provides headlines and links to further reading for news, advocacy and research from w/c 8th April.

Topics this week:
News, advocacy and articles
Research news and commentary
#MECFS and related research
& #LongCovid research

https://t.co/Mjlv9c9QGz

[Science for ME online forum @s4me_info]

The forum committee has written to the ME Association to detail concerns about their project developing a new clinical assessment toolkit using PROMs (patient reported outcome measures) intended for use in NHS #MECFS specialist services.

#MEAwarenessHour

https://t.co/fxnU0yZ8qQ

[Science for ME online forum @s4me_info]

A thread for eleven #MECFS, #LongCovid and related research papers from w/c 1st April 2024.

Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Inclusion does not equal recommendation.

1/12

[Frances Ryan @DrFrancesRyan]

A hugely important piece by @iEllieFry on Millie McAinsh - a teenager with severe ME who is currently in hospital and deteriorating due to medical neglect. I cannot imagine a patient with any other condition being treated this way. https://t.co/w2AMLr8O9L

[Action for ME @actionforme]

Link to segment on YouTube: https://t.co/ebru7E8bNr

[Science for ME online forum @s4me_info]

A thread for eighteen #MECFS, #LongCovid and related research papers from w/c 25th March 2024.

Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Inclusion does not equal recommendation.

1/19

[BeeCeeDee @boxingcatdog]

@SockFoam @domsalisbury Dedicated discussion thread on there, https://t.co/gdGU7mVbKF

[Science for ME online forum @s4me_info]

In our latest update to our petition, we officially present the petition to @cochranecollab, and give them 10 reasons why they should withdraw their harmful and flawed review of 'Exercise therapy for CFS'.

Now at 10.5k signatures.

#MEAwarenessHour

https://t.co/H0wkJJF2pm

[Science for ME online forum @s4me_info]

.@angryhacademic writes on the interactions of scientists and patients with #MECFS and #LongCovid.

"The aim is to not declare some universal truth, but instead to give my perspective from having this dual role.."

#MEAwarenessHour

https://t.co/Jp9lctO0s4