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What are people using for evidence these days for assessments? A few years ago a welfare rights advisor knowledgeable of MECFS advised only consultant letters were useful. She knew I had comorbidities which had me seen by consultants so could use them. I will be going through a WCA at some point...

Seconded

100% , the mods here tread a fine line very well.

Yes that was covered in the book

Absolutely. I recently read (listened to) a book called trauma stewardship which described how working in a ‘doing good’ role can change the way you think and act, with examples from healthcare, social care, humanitarianism, charity work, commissioning etc., and described how people ‘protect’...

There was a detailed discussion about our experiences of alcohol, will have a look ETA alcohol intolerance poll and discussion of experiences

Didn’t know nice had created an educational programme

It is..but can be done to a decent degree, especially if you can spare some inches in the room, soundproof panels make the room slightly smaller. There is a lot that can be done but you would need a professional to advise, and would cost but perhaps not more than building an outside room.

Not really a helpful suggestion more of a question but if someone is severe how are they going to manage toilet trips without a toilet nearby and also having to go outside and inside again - therefore going through rapid temperature changes? Some suggestions - lots of noise dampening, not sure...

I find myself sitting with my feet on the floor rather than having them rest on the sofa, and walk about a bit more, when I occasionally take it. It has been discussed in more detail on other threads too - not sure under what headings.

According to this pub of 2022 Rimegepant, Ubrogepant, and Lasmiditan in the Acute Treatment of Migraine Examining the Benefit-Risk Profile Using Number Needed to Treat/Harm I haven’t examined the references, the references to ubregepant are: 18. ClinicalTrials.gov. Efficacy, Safety, and...

I am also on atogepant, which has really helped my migraines, headaches, and my coat hanger pain/neck shoulder back and sometimes arm pain.

That’s funny, a warm shower is what I do to heat up when I am stuck in cold mode, if I can muster the energy, it makes me more tired in a different way and might be to do with the heart rate/BPchanges that the standing and the heat seem to cause.

Sometimes I just say “I’ve got syndromes”, in a slightly dark and sarcastic tone and leave it at that.

I found two cushions which helped me to be a passenger in a car again. Whenever I rode in a car I was in a lot of pain in my lower back/tailbone, upper back and neck, shoulders, and a little going into my arm. I have heard of “coat hanger pain” and it looks very much like that to me. I was also...

I have been taking a magnesium complex at night for years and go through periods where I get drenching night sweats and nightmares, recently read somewhere on reddit that a lot of people are attributing drenching sweats to their magnesium supplements, stopped the magnesium and over the next...

Yes, but with TOC there is often also tingling or numbness and a strange heaviness that is different to 'I have rapidly fatigued'

Me too, and it's not the same as the fatigue that hits disproportionately quickly, or as part of PEM, and/or upon waking.

Ultimately for all disabled people but the roll out is focussed on learning disabilities first - probably as a way of managing limited resources and managing a changing way of working

There’s one for learning disabilities and autism that is more like your description