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We do need this kind of information. I am glad they have looked at it. I was surprised at the conclusion that pain wasn’t a factor that differentiates between those most at risk and those not. I wonder if those that had pain but didn’t commit suicide were in the bedbound and unable to carry it...

Is it available for free? I can’t see how to read the full article without paying. it’s important work and I am glad they have published it. We could use a bigger study or collection of cause of death stats for all of us.

Has anyone else received a text from the NHS about social prescribing? It has a link to this video and asks me if I want “social or community support”. While I need some support of some kind, as I feel pretty much abandoned by the medical profession, if I had the energy to be social or be...

Well, I had to post something to my GP surgery so I scribbled a quick note on it for my GP about the CPD on ME/CFS. You never know...

Thanks. That is a useful thing the MEA are doing. I hope their ME essential magazine reflects people like me and covers some of the complex issues with accessing healthcare, and finding anyone who we can have a real conversation with about our health. It would be good to include things about...

Yes I completely agree. It needs to be highlighted to them all somehow, but until NICE guidelines change I can’t see many bothering, and that doesn’t help us as patients to approach them. My GP is fine, but does not take an active interest, nor treat me as an “ME patient”. All advice is...

I would like to share it with my GP and surgery but am hesitant as I tried to share a POTS information session before and got quite a hostile reply. It was also for CPD points and just an hour. Any thoughts on how to approach a surgery in a what that doesn’t annoy? How are these things usually...

Should we invite Miranda to the forum? She’s really speaking out about chronic illness at the moment, including ME. She has not disclosed why as yet, but she did say in one video that she is not eating gluten or sugar and was drinking a “medicinal tasting” water with a dash of orange juice...

fair enough. For my partner going into a shop it’s just brief and may be better than cotton fabric alone?

If it was freshly applied the fumes would be inhaled and kill the virus? It says in the article that it can kill the virus in 30 seconds in the air This is the link posted higher up the thread, by someone else: https://pdfs.semanticscholar.org/bc37/c48fb2babb83d333d9e4193bf7960040222d.pdf

Does anyone know how make an iodine infused “filter” layer? It was mentioned somewhere on the forum that the Chinese recommended (I think) it for killing more viral particles of you breathe through fabric with iodine. I do have iodine and wondered whether to 1: just put a line down the centre...

What is the Sheffield council helpline number?

1.5 million people in the UK considered “vulnerable” are about to get a letter telling them to isolate. I wonder how many people with ME will get it? Hopefully housebound people with ME will be seen, though the practicalities are more difficult as we all rely on other people!

I agree. I don’t think the cognitive issues are taken account of, especially in disability/benefits assessments. For PIP (UK) the assessors report for my application summarised that CFS includes cognitive problems, then they award me nothing on that part because “I am not diagnosed with a...

Glad to hear you will continue fighting with us David, I am glad you are at home and hope you & yours stay well. As you say, there is always stuff to work on. I think the PVFS implications of corona virus need to be further up the agenda, for sure. Thanks!

The panel you have got there is really great. I really hope people do turn out for it and that corona virus doesn’t get in the way.

I also agree about Voices from the Shadows. Unrest was good for awareness raising but from an educational point of view and given Jen’s journey since, it is confusing. It demonstrates the mess we are all in, without proper diagnostic tests though!

A while ago there was an online talk for one hour which counted for CPD points on POTS and ME. I shared it with the practice manager at my local GP surgery. He said that: “the very nature of general practice means my GP's don't have resources or time to become familiar with conditions that...

I did get IBS pre viral trigger, but my mum was very much against excess antibiotics and I didn’t have many, and not at all when very young as far as I know. I also grew up on a farm and then in a big garden and played outside all the time. You hear these theories about not getting exposed to...

And of course there are the severely ill people who are cared for by aging parents who do not know what will happen to them in the near future. parents of a friend had thought about turning their home into a charitable organisation providing places for several people with ME in this situation...