I see the Tocilizumab trial in the UK requires elevated CRP. How many Long Covid patients have consistently elevated CRP? I was under the impression it is not generally....

For those with #LongCovid , is your CRP consistently high?

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 ➡️ shorturl.at/iBW78

📢 Calling all #pwME ! Join the 44 participants in our HHV-6 study who are shaping the future of #MECFS research.

If you are:

💙 Male aged 18-30 years old
💙 Female aged 31-40 years old
💙 Female aged 51-59 years old

Apply now 👉 bit.ly/3Qqctgx

Reminder: This Friday, 5/3 at 1:00pm ET - Renegade Research & #MEAction Network bring you this Clinican's roundtable with Todd Davenport - Clinican's can earn 1 CME credit.
Register at: us06web.zoom.us/webinar/regist…
#MedTwitter #MECFS #longcovid #IACI

I have subscribed ✔️ and signed up for the newsletter ✔️

This is exactly what we need. Thanks Nicola & Steve 👏

#MECFS #TheChronicCollaboration

#MEAwarenessHour

At the moment I feel too emotional to comment comprehensively on the #MEDebate held this afternoon. Hearing our situation spelled out was painful and hearing the minister’s response to the many excellent speeches has not yet given me hope. Other opinions? #pwME

'We win this time' - UPDATE on #SaveCarlasLife it's amazing what happens when you have a prominent barrister on speed dial... #ExposeMENow

Since when were psychiatrists opinions taken above a specialist consultant’s? Or is that only when #MECFS is involved.

#SaveCarlasLife

#ExposeMENow

20-year-old Lucy developed a headache then other worrying symptoms, but instead of being correctly diagnosed with brain inflammation, Lucy was sectioned. She was then given ECT therapy, which caused an accident that left her paralysed.

#Encephalitis theguardian.com/society/2021/a…

📢MONTH OF NOISE📢 Safe Inside has teamed up with 65for65 and Long Covid Support 🌍 We are asking people to make a 65 second phone call to their local dentist or optician and tell us the outcome. We will combine and amplify. See safeinside.co.uk/month-of-noise

TONIGHT 8PM:

We're pleased to say we're launching our website during #MEAwarenessHour TONIGHT at 8pm. This is a project that everyone can be involved in - so we hope you'll be online later today for the launch #MEcfs #EDSAwarenessMonth #SaveCarlasLife
thechroniccollaboration.com

can anyone who's used maraviroc tell me what their experience was like?

Has anyone bed-bound with severe #MECFS tried midodrine? What was your experience? I am due to start basically last week lol and feeling very nervous 😊

Ps. I know I need to try and prop myself up. Also feeling nervous to do that all day.

TIA!

Please support Stewart in his annual walk for @invest_in_me (Invest in ME Research) 🇪🇺. He'll be joined by The Real M.E. 👩‍🦽🦥♿️🏴󠁧󠁢󠁳󠁣󠁴󠁿📢 in her wheelchair for the last 3 miles. Thank you Jo, Dave & Stewart Syme. Walk for M.E
justgiving.com/page/stewart-s…

The most common disease you’ve probably never heard of:

ME/CFS 🧬

A soul-crushing condition.
 
Here is a thread for those who might not know that they have it or would like to know more 🧵

I’ll never understand NHS logic. We are forced to go private because of NHS cuts, lack of expertise or referral rejections! The private diagnosis / advice / medication is denied by the NHS and DRs are called quacks even though they may also work for the NHS. MAKE IT MAKE SENSE.

Please sign ✍️ and share if you haven’t already ❤️

#MECFS #BringMillieHome #SaveCarlasLife #LongCovid