Dear #MedTwitter : genuinely want to help diagnose and treat “complex” + “mysterious” patients that are falling through the cracks? Follow: Dr. Blitshteyn S Blitshteyn MD, FAAN, Dysautonomia Clinic, Dysautonomia Intl. International, Putrino Lab, Dr. Thomas Donald Thomas, MD, Sarah Schafer MD MPH, Neuro Sjogrens.🌟

I went to the Dr as I've done my back in, which on top of my neck being unable to support my head, is not great. Nurse showed letter from rheumatologist who saw me for a grand total of 5 mins and first suggestion was I had chronic pain syndrome and needed graded exercise therapy.

Thank You, German Federal Minister of Health, Prof. Karl Lauterbach 🙏

#UniteToFight2024

Unitetofight2024 wird eine Durchbruch für die #MECFS Forschung werden. Top SpezialistInnen aus der ganzen Welt, bis zu 10.000 Online Teilnehmer. Danke an Carmen Scheibenbogen für den wichtigen Beitrag, dies mit auf die Beine zu stellen.

German Federal Minister of Health, Prof. Karl Lauterbach regarding #UniteToFight2024 :

„UniteToFight2024 will be a breakthrough for #MECFS research. Top specialists from all over the world, up to 10,000 online participants [...]“

Thank you for taking part in this unique project and

I’m really going to need Long COVID research to stop overlooking MCAS. There is absolutely no way of addressing LC without addressing MCAS and while there are many meds to try, research has a long way to go.

Olena ‘Olenka’ Sayko I think you're absolutely right - MCAS is bottom of the pile in terms of research papers for this set of IACCs in 2023

The ratio between Long Covid & MCAS papers is incredibly stark, given the impression of how many with LC suffer from MCAS

Dear Senator Kaine,

nice to e-meet you ! We are currently building the world largest conference on Long Covid & ME/CFS ever held. We have some space reserved for politicians who are acting as allies. We want to offer you one virtual seat in our opening ceremony. Can we we get in

„Use her name and explain it, tell the world about it…''

We haven't shared the origins of the idea of #UniteToFight , which was inspired by the unfortunate loss of Lauren ✨ who suffered from ME/CFS.

Out of deep respect for Lauren and her family, we kept it private until

Congrats to our undergraduate researchers Jade, Adam, Jyotsna, and Iqra presenting their posters today at Massachusetts Institute of Technology (MIT) Massachusetts Institute of Technology (MIT)deptofBE!!! What an incredibly talented, smart, dedicated group who have been working so hard with us getting to showcase their work today and I'm just so proud!!!

The behaviour of doctors is in the spotlight once again with doctors at West Middlesex Hospital misdiagnosing this patient's severe M.E. and ignoring NICE guidelines. Lives have been lost in similar circumstances. #r4today #MECFS #SaveCarlasLife
thecanary.co/uk/analysis/20…

Main take away is sounds like offices are hearing from their constituents more on #LongCovid , there is more understanding Congress needs to act on this issue, and to me seems very worthwhile reaching out to your congressperson to establish relationship on this issue.

What gets me about Sunak’s attempts to demonise PIP is he isn’t considering PIP helps disabled people stay in work.

I receive PIP, I work 40h a week. It helps me keep my mobility equipment in working order as well as cover some expenses associated with being disabled.

Lord Bethell #longcovid plays a big role here.
We would like to invite Lord Bethell and his network to the world largest #LongCovid conference. The most renowned experts are speaking - more than 35 of them. Including Danny Altmann . The best part ? It’s free to attend online:

1/3 I'm livid. Admin from GP practice rang to confirm my dosage for LDN was being increased as per Dr Bansal's instruction. She noticed I had MECFS on my record and said 'I have that too'. She sounded EXHAUSTED. She said she spends her lunch break sleeping in her car. She said

PIP has nothing to do with employment.

PIP is for moderate to severe disability and it is v difficult to qualify for.

It is not something one can blag. I research this.

Sunak's idea people can go off PIP with treatment is wild and dangerous. It is disability denial,no less.

Some people ask me why I don't even go out in my wheelchair: my #POTS is so bad that I can't stand or sit for long periods of time (2-3 minutes). And most people don't know what POTS is. I also can't get an electric reclining wheelchair. And: who will carry me down the 7 steps?

Millie wouldn’t have got a private diagnosis if it wasn’t necessary.

She’s stuck in a Catch-22 that the NHS has created where they won’t diagnose her, but also won’t treat her as they haven’t diagnosed her.

Nearly one in four adults who had COVID-19 have developed long COVID symptoms, according to the latest Census report.

This hour on Where We Live, we discuss long COVID research, the need for funding, and reflect on the four-year mark of the pandemic. trib.al/1nDql7W

A wave of mass chronic illness has been a part of every major pandemic in history, yet ppl cannot understand why we're now seeing a wave of mass chronic illness. Brainless beyond belief. Wanna do something about said chronic illness? Fund #LongCovid biomedical research & trials.