I just started listening to the webinar. I’m at the point where the discussion is about how to make sure only people with ME take part (ie not...
I went all the way to the end of this questionnaire and clicked submit. Basically for all the questions I clicked “very worried” about, like...
Mine is every 3 years too, but they contact me every 2 years. It’s very stressful. Same for ESA I think, although I need to check. At the first...
[in response to @Jonathan Edwards “ Jonathan Edwards said: ↑ The same. She resigned, but after signing up to the revised guidelines. Why she...
In the minutes it says: “Paul Chrisp also thanked everyone for their time and added his key points: • There is more agreement than disagreement....
Association of British neurologists (my bolding): “We are concerned by the recommendation to risk assess each interaction with a person with...
Hi @Perrier i read some of your messages in this thread and just wanted to share what helped / is helping me. I think pacing when severe or very...
I need to mention these here before I forget! The comfiest and softest trousers! I live in pyjamas but really miss wearing nice clothes. I have a...
@JemPD thanks for letting me know. I still haven’t found a ready made drink that I am able to tolerate AND not feel sick at the taste of. Some end...
Some links that may be useful https://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Spasticity...
Sorry I wanted to tag @Snow Leopard in the above to get your thoughts as well.
I would like to know if this claim, is true. Public health england has done a study and they are saying two doses of the vaccine provides over 80%...
I’ve recently started being able to eat oats again (was suddenly intolerant one day, a few years ago, now I tried again and I’m suddenly not). I’m...
Sorry if this is slightly off topic but I don’t think talking / a telephone number is an easy option for a survey, if you’re severely affected?...
In the NICE guidelines, it is only prescribed in psychosis or mania in the U.K. https://bnf.nice.org.uk/drug/aripiprazole.html Even as an...
On Facebook, on the same public post, Dr Charles Shepherd has been answering comments. People have commented asking why he didn’t mention the...
ME association facebook post: [MEDIA] ARIPIPRAZOLE There has been some discussion about this medication and ME/CFS on social media. Dr CS...
It could do but is there research saying glucose is actually bad for patients with ME, or even could be harmful? All I remember is issues with...
Unfortunately things like ensure may be the only thing that some severe ME patients can tolerate. I have lived for months at a time, or even...
My friend gets a prescription through a hospital dietician, I think, who is part of her gastro team. She doesn’t have ME though. I’m still trying...
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