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@mariasevereme4.bsky.social
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lifeatthewindow.bsky.social
This struck a chord. Nope, I’m not watching tv and movies all day.

My brain can barely process an audiobook.

When I spend too long on here, I get sicker.

I am, though, just lying down in the dark and silence waiting for all sorts of horrible things to stop happening to my body.

#pwME #MECFS
rippermd41.bsky.social The Real McCoy @rippermd41.bsky.social · Dec 14
I think this is one of the things family and friends don’t understand about #MECFS

Watching tv? ❌
Reading? ❌
Doing a craft? ❌
Social media? ❌

All of them use energy, so we have to budget them.

Otherwise we spend so much time doing literally nothing.

Let me paint a picture 🖼️
kateviolette.com Kate Violette @kateviolette.com · Dec 13
I think I might watch a little TV with dinner tonight, which is the first time I have felt up for watching TV in like two weeks. I always get super excited when my ability to watch TV returns.

y'all have no idea how boring it is to have an illness that doesn't even let you watch TV sometimes
December 14, 2024 at 8:34 AM
Reposted
alexisme.bsky.social
After an article by the chairman of the ME Association I’ve drafted a letter. You can add your name to the bottom or DM me l'll add it. I've written it from patients but if you're a carer, ally or health professional, just note after your name eg (Carer for pwME etc)
docs.google.com/document/d/1...
Letter to MEA Nov 2024
If you notice any errors, please correct them but track changes so I can see them. Dear ME Association We are writing to you as patients with ME. We were shocked and offended to read the editorial...
docs.google.com
November 17, 2024 at 11:59 PM
Reposted
sabrinapoirier.bsky.social
If you are a #clinician / #researcher with a curiosity about #MyalgicEncephalomyelitis and you want to check your understanding…or learn more, I would be happy to book time with you/connect you with my smart friends.

Just DM me.

When we know better, we do better. It’s never too late. 💙
November 18, 2024 at 4:19 AM
Reposted
emilyesfraser.bsky.social
Please do look into #GreatestMEdicalScandal @hankgreen.bsky.social @johngreensbluesky.bsky.social ! The Long Covid crisis grows out of the sordid history of ME, one of the most common & disabling of chronic illnesses. This history is essential to grasp what LC patients & researchers are up against
November 18, 2024 at 10:25 PM
Reposted
arisonsned.bsky.social
Please follow Mike! He is an incredible Human who has run over 9000 miles to raise money for @investinmeresearch.bsky.social over ten years raising over £50k to help #pwme #myalgicE 💙
mikeseumarathons.bsky.social Mike's Euro Maras for M.E. @mikeseumarathons.bsky.social · Nov 16
Thanks for following if you don't know me.

I've just passed the 10 year anniversary of when I began running marathons for ME research.

I'm aiming to raise funds for biomedical projects whilst connecting and highlighting the stories of people with ME that I meet

🇨🇿🇫🇮🇮🇪🇬🇷🇱🇺🇸🇪🇵🇱🇧🇪🇫🇷🇪🇸🇱🇹🇲🇹🇪🇪🇸🇰🇳🇱🇸🇮🇨🇾🇱🇻🇭🇺🇷🇴🇵🇹🇩🇪🇭🇷🇮🇹🇦🇹🇬🇷🇧🇬🇳🇴🇱🇮🇨🇭🇷🇸🇲🇪
November 18, 2024 at 1:07 PM
Reposted
cabruce.bsky.social
#ME is a violent, turbulent condition. Words like brain fog, tiredness, aching, mood disturbance, interrupted sleep patterns, do not begin to describe the turmoil of #MECFS bodies. It’s like being attacked by a malevolent being, often for decades and without help or understanding.
November 14, 2024 at 12:39 PM
Reposted
cabruce.bsky.social
@georgemonbiot.bsky.social described this as one of the most disturbing he has ever covered. It’s about #ME and how the views of a weird sect affected science, medicine and the media with a devastating effect on patients.
It continues to erase the reality of our lives. #medicine #media #pwME
Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen? | George Monbiot
Chronic fatigue syndrome is as physiological as a broken leg. ​We must learn all we can from this tragic case, says Guardian columnist George Monbiot
www.theguardian.com
November 18, 2024 at 9:28 AM
Reposted
cabruce.bsky.social
When it comes to relating the severity of #ME or #LongCovid there seems to be no amount of evidence, presentation of facts or changing the narrative that will convince some people of the urgent need for well funded research and care. It’s always turned around and the messenger becomes the problem.
November 19, 2024 at 10:55 AM
Reposted
valerieeliotsmith.bsky.social
INTRO POST: just got set up here although not migrating from the other place(s). Will be expanding my presence here in due course but interested in connecting with other members of the #ME or #MEcfs (sic) community.
Interests include health/science, law, journalism, tech. Blog valerieeliotsmith.com
November 17, 2024 at 5:58 PM
Reposted
julesahouston.bsky.social
#ThereForME rightly suspends collaboration with the ME Association.
"In good conscience, we cannot continue our collaboration with the ME Association until the community’s valid concerns have been sufficiently addressed." #MyalgicEncephalomyelitis #pwME #MECFS #LongCovid
karenlhargrave.bsky.social Karen Hargrave @karenlhargrave.bsky.social · Nov 18
We are sad to announce that #ThereForME has suspended our collaboration with the ME Association.

We feel that concerns from the community must be heard. The door remains open to continue our collaboration once action is taken and concerns addressed.

More here 👇
We are very sad to announce that the #ThereForME campaign has suspended our collaboration with the ME Association. Like others in the ME community, we have deep concerns about a recent editorial published by the ME Association and authored by the ME Association’s Chairman (‘Animals need to move’). We wrote to the ME Association today expressing concerns about the editorial and asking for an update on the actions that the ME Association would be taking to address them. We did not feel that the response we received was adequate and so we have taken the decision to suspend our collaboration with immediate effect. We are very proud of how we have managed to bring the ME and Long Covid communities together under a shared advocacy message since launching the campaign four months ago. We believe our community is strongest when we can work together and so this is not a decision that we have taken lightly. However, we are also very grateful for the trust we have built with the ME community. We therefore feel that we cannot in good conscience continue our collaboration with the ME Association until the very valid concerns from the community have been sufficiently addressed. We have made clear to the ME Association the actions we believe are necessary from their side in order to resume our collaboration. The door remains open to continue working together once we feel sufficient action has been taken. We very much hope that this will be the case. In the meantime, we will be focusing our time and energy on what we feel our campaign does best: speaking up for people with ME and Long Covid, who will always be at the heart of our campaign. Karen, Emma and Oonagh
November 18, 2024 at 10:58 PM
Reposted
julesahouston.bsky.social
Following #ThereForME's announcement, let's keep the momentum going! Alexis' open letter has already gathered 391 signatures. Let's aim for 500 by the deadline tomorrow. Carers, allies & HCPs, your support matters, please sign. Let's send a strong message to the ME Association @alexisme.bsky.social
alexisme.bsky.social Alexis Gilbert @alexisme.bsky.social · Nov 17
After an article by the chairman of the ME Association I’ve drafted a letter. You can add your name to the bottom or DM me l'll add it. I've written it from patients but if you're a carer, ally or health professional, just note after your name eg (Carer for pwME etc)
docs.google.com/document/d/1...
Letter to MEA Nov 2024
If you notice any errors, please correct them but track changes so I can see them. Dear ME Association We are writing to you as patients with ME. We were shocked and offended to read the editorial...
docs.google.com
November 18, 2024 at 11:33 PM
Reposted
emmagl.bsky.social
We're sad to announce that #ThereForME has suspended its collaboration with the ME Association.

We truly hope that we can collaborate again when the concerns raised by the community have been adequately addressed.
We are very sad to announce that the #ThereForME campaign has suspended our collaboration with the ME Association. Like others in the ME community, we have deep concerns about a recent editorial published by the ME Association and authored by the ME Association’s Chairman (‘Animals need to move’). We wrote to the ME Association today expressing concerns about the editorial and asking for an update on the actions that the ME Association would be taking to address them. We did not feel that the response we received was adequate and so we have taken the decision to suspend our collaboration with immediate effect. We are very proud of how we have managed to bring the ME and Long Covid communities together under a shared advocacy message since launching the campaign four months ago. We believe our community is strongest when we can work together and so this is not a decision that we have taken lightly. However, we are also very grateful for the trust we have built with the ME community. We therefore feel that we cannot in good conscience continue our collaboration with the ME Association until the very valid concerns from the community have been sufficiently addressed. We have made clear to the ME Association the actions we believe are necessary from their side in order to resume our collaboration. The door remains open to continue working together once we feel sufficient action has been taken. We very much hope that this will be the case. In the meantime, we will be focusing our time and energy on what we feel our campaign does best: speaking up for people with ME and Long Covid, who will always be at the heart of our campaign. Karen, Emma and Oonagh
November 18, 2024 at 8:51 PM