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There’s a lot to be said for having someone who isn’t a friend or relative, boss or colleague to talk to about stuff that you’re finding hard, grief for example - all those people have their own agendas. I have been talking to a counsellor regularly every 4-8 weeks for over 10 years. My mental...

Apart from the issues around the CF article there’s a lot of translationese going on.

Not necessarily bad news if he’s serious enough about trying to help there’s nothing to stop him using his network to have informal discussions with his fellow members of the government - so possibly can be more influential from within than he would be as a backbencher. Keeping up contact with...

At some point they will stick their fingers in a pie too far - could HIV be the one? Let’s hope so.

Judge a man by the company he keeps...............

The answer to the question in the title - go and take a long hard look at yourself in a mirror.

Yes he’s like the class swot trying to outdo all the other arses

Having ME to me is a kaleidoscope of frustrations. Being annoyed about feeling lucky that I can do the things I manage to do. Being able to spend time with people but how crap that makes me feel afterwards. Being retired from work yet just organising my life to try to minimise PEM feels like a...

Isn’t secondary gain just an intellectual sounding term that means more or less what silver lining means to the general public.

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