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drglammie.bsky.social
#pwME #Cavies
7 posts 108 followers 580 following
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Posts 22 Comments 9

Cerebrospinal fluid ‘..may indicate myelin and white matter dysfunction in ME/CFS’

submitted 18 hours ago • 0 comments

Georgetown study finds ME/CFS patients have elevated serine, reduced folate, and altered lipid metabolism in cerebrospinal fluid, suggesting brain dysfunction. Exercise worsens imbalances, unlike in healthy controls. www.nature.com/articles/s41...

submitted 1 day ago • 3 comments

Disability Rights UK @disrightsuk.bsky.social is urging #disabled people & organisations to take part in a non-government #consultation on a proposal for an Additional Costs Disability Payment to replace #PIP Deadline 14 March. Find out more: www.commissiononsocialsecurity.org.uk

submitted 8 days ago • 2 comments

Why do UK Infection Prevention and Control (IPC) guidelines still not acknowledge airborne transmission of Covid-19? | Anne Marie McConway @annemarie1.bsky.social northwestbylines.co.uk/news/health/...

submitted 26 days ago • 8 comments

Research paper: Post-Exertional Malaise in people with #MECFS evaluated by analysis of the cerebrospinal fluid. www.mdpi.com/1422-0067/26...

submitted 29 days ago • 2 comments

People with #MECFS suffer from post-exertional malaise, a general exacerbation of symptoms after physical or mental activity. Did you know that cells from #pwME that are stressed with saline water show a delayed response that is different from healthy controls? #MEAwarenessHour

submitted 26 days ago • 2 comments

There is hardly any fraud in the disability benefits system. In response to my parliamentary questions, the DWP says just 0.2% of personal independence payment (PIP) spending is due to fraud. Today I called for an end to the scapegoating of disabled people on benefits.

submitted 28 days ago • 17 comments

A letter to @bmj.com from Professor Jonathan Edwards of UCL about Cochrane's indefensible decision to abandon a long-promised update of its very flawed 2019 review of exercise therapy for ME/CFS: virology.ws/2025/02/03/t...

submitted 29 days ago • 0 comments

This is deeply shocking and disturbing, the opposite of scientific good practice. As I see it, a group of diehards promoting a discredited treatment (exercise "therapy" for ME/CFS patients) are seeking to stifle medical progress - to protect their reputations. And Cochrane has kowtowed to them. 🧵

submitted 34 days ago • 22 comments

Petition update: * Retraction Watch reports on Cochrane abandoning the planned review. * Cochrane's Independent Advisory Group [IAG] release an open letter expressing dismay and concern. * Hilda Bastian, the lead of the IAG, blogs sharing her view on the decision. www.change.org/p/cochrane-w...

submitted 38 days ago • 0 comments

Well done to Mark Vink on getting another piece published: this one has the provocative title, "CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases, yet no one is aware of that" www.frontiersin.org/journals/hum... #MEcfs #CFS #PwME

submitted 47 days ago • 12 comments

Not the news I’d hope to share but—NIH’s massive Long Covid study has a new paper finding 1 in 22 participants who had Covid developed the neuro disease I have, ME/CFS. 80% of people w/ME are too sick to hold a full-time job—gov abandoning us to face this risk on a daily basis is unconscionable.

submitted 45 days ago • 7 comments

Every single person who confuses correlation and causation ends up dying.

submitted 59 days ago • 2 comments

NEW: The DWP consultation into plans to slash billions of pounds from disability benefits has been ruled unlawful in a damning High Court ruling. Mr Justice Calver repeatedly described the consultation held in autumn 2023 as “misleading”, “rushed” and “unfair” www.bigissue.com/news/social-...

submitted 47 days ago • 11 comments

Conservative ministers prevented research that showed disabled people on out-of-work benefits were subject to high levels of stress, debt and isolation from being included in a controversial policy paper that called for cuts to spending on those benefits.

submitted 46 days ago • 1 comment

All I want for Christmas is for the world to recognize that #ME is a veritable health and human rights scandal. And that the ongoing pandemic is making it exponentially worse. #GreatestMEdicalScandal #LongCovid #MECFS #pwME #JohnVsJonVsME @johnvsjonvsme.bsky.social johnvsjon.com

submitted 68 days ago • 1 comment

SKY News segment on #MECFS (20 mins), Includes interview with Heather Gordon, whose daughter Karen has effectively been trapped in hospital for a year with severe ME. Also features Chris Ponting and Anna Gregorowski from BACME. youtu.be/FX6Fk9-WSmo?...

submitted 84 days ago • 3 comments

It says a lot about #MECFS and #LongCovid that there could not be an ME/CFS Olympics...Because if we tried to push the physical limits of our bodies like that, all the winners would simply die... New post on my blog: www.whitneydafoe.com/mecfs/?post=...

submitted 147 days ago • 3 comments

Reposting some #MyalgicEncephalomyelitis content here on bsky: #DecodeME: Being female, being older and being over 10 years from #MEcfs onset are significantly associated with greater severity of disease. In DecodeME, 83.5% #pwME are female. openresearch.nihr.ac.uk/articles/3-20

submitted 113 days ago • 3 comments

Cochrane is stubbornly refusing to withdraw the 2019 review recommending exercise therapy for ME/CFS despite being supplied with ample evidence that it doesn't work and causes harm for #pwME with post exertional malaise. Please sign the petition: chng.it/zTZ7vX9Czd

submitted 114 days ago • 6 comments

The impact of ME/CFS versus funding Illnesses listed on the bottom if you can't see it: Sickle Cell Disease, Brain Cancer, Parkinson's, Multiple Sclerosis, HIV/AIDS, ME/CFS. From Jeffrey Tran's video (warning: is a bit noisy) www.tiktok.com/@poisedleft/... #MEcfs #CFS #PwME

submitted 164 days ago • 3 comments

Muscle physiologist Rob Wüst has been awarded a grant from ZonMw for his research project, ‘From sick to sicker with exercise: deciphering the base of #postexertionalmalaise in #postCOVID’. ZonMw is also funding 4 additional research projects involving Wüst as a co-applicant vu.nl/en/news/2024...

submitted 117 days ago • 4 comments