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The reason I don’t want my illness treated as psychological is because I had a depression diagnosis for about 10 years before I was finally diagnosed with ME. I took fluoxetine and had counselling for all that time, pushed myself to work 85% of full time and also at times tried to do exercise...

Interesting response. It struck me that your approach might be a good thing for Cochrane because they could say ‘a different project’ was needed and it would be less direct in overturning the current review. If they stick with the focus on exercise the only properly science based outcome is...

Mail coverage is a lot better than the so called broadsheets worst coverage in my opinion apart from Frances Ryan articles is the grauniad. As time passes - now 5 years since diagnosis and becoming a member of ME community - I try to take a step back from all such publicity which I’m not the...

Sorry can’t post it but further down that twitter thread my reading of it is that he he says it’s one thing in the blood that’s been found but there will be others not yet found

I recently started getting my cleaners to change the bed for me there are 2 of them so it takes them no time at all to strip the dirty bed linen and put clean on. So I get clean sheets every fortnight now rather than every couple of months. I used to do the bedding as 3 different tasks...

Special mention to AFME in the thanks at the end of the booklet. Pretty similar to their new pacing booklet innit - same NHS source - gosh what a surprise

No sanitizer available on my order either. I’ve got tea tree wet wipes though which are pretty good. My medication is only prescribed two months worth at a time. I’ve been stocking up on paracetamol and easy to prepare food just in case. If anyone isn’t freaked out enough and you have S k y...

The employers could start by making sure that buildings are properly cleaned and ventilated especially if they are going to expect people to work in air conditioned offices. Sick buildings notoriously spreading legionnaires through A/c. I worked in a building that had pigeons roosting on the...

My cleaning tips are Fortnightly cleaners I wipe over the work top when I’ve been cooking so it doesn’t get too gruesome Raise tolerance levels for dusting, hoovering, windows - done by other people these won’t be done to your mum’s standards. These are too high energy to be tackling...

@Action for M.E. for the future you could consider getting more active rather than reactive input from those unable to attend in person. As @MerryB said further up you could do a survey, ask people to post their suggestions beforehand, or you could be more inclusive and run it as a webinar...

@rvallee yes An entire enormity of excrement

Whatever happened with the previous APPG and how impressed or unimpressed people were this is a different time and a new group of MPs. Carol Monaghan is doing a good job in getting ME highlighted. I think it is right to understand that an APPG can’t work miracles but i have confidence that CM...

Admittedly wrist monitors aren’t that accurate but I’ve noticed that in mornings 8-10 when according to sleep hygiene I should be getting up it often records that I’m getting deep sleep how can that be bad for me. I know the standard normal person thing is to get deep sleep at the beginning of...

He did say he was going to be addressing MUS when he did his crowdfunding DT that is

Why am I not shocked :wtf::wtf: :wtf::wtf::wtf: these people are disgusting - what will it take to shake them out of their smug superiority complex mindset

Article from BBC on how to self isolate. https://www.bbc.co.uk/news/uk-51506729 this talk of self isolation should be taken as an opportunity @Action for M.E. @Russell Fleming to highlight to journalists the chronic isolation of people with severe ME

On Lords involvement Nicky Morgan has left the government so maybe will be able to get back involved with ME through this group. Her connections within the government party would be of use.

I didn’t have any such discussions about fluoxetine even less so about pregabalin and then Amitryptiline which were subsequently added on.

Part of the problem with these questions is they will have been written by MPs researchers who have no knowledge. If some people with ME were to come up with more challenging questions they would like MPs to ask presumably that could be shared with the APPG and they would be willing to ask them.

Was thinking exactly the same thing. I was rather frustrated by the fence sitting.