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I think you’re absolutely right to avoid tiredness as a description. I think having no energy or charge on battery is more likely to be perceived as something ‘not normal’ sick absence and triggers is a minefield especially if your manager is of the robotic type who hides behind rules rather...

As I understood his response to @Robert 1973 rather than having his mind changed by anyone Dr Strain explained he already didn’t think GET appropriate for people with ME but had misheard the question from the interviewer

I would hope they are not talking about PACE style GET. Surely they have some knowledge of the history and its disappointing they have not thought about the implications of their terminology

Apparently the full thing is available from the authors in pdf if anyone is interested to get a copy

If you don’t live too far from your office and able to drive if there’s parking considering asking for a space. Maybe involved if they say you have to have a blue badge and you haven’t got one. I was on a parking rota as spaces were limited but because I only went in occasionally I could...

Yes my pension was affected from the decade at 85%. I only went to 15 hours for a year or so before retiring early and that didn’t affect my pension much although obviously I had taken a big cut in salary for that short period.

I think the meetings in person or in the office definitely depends on your organisation. I worked in a large organisation my team were based in various U.K. locations so we did a lot of our business by teleconference anyway. Being in the local office didn’t bring me work benefits. For face to...

Oh gosh yes that AFME booklet was what I used because I didn’t know any better. I remember the example in there of flexibility was someone who worked for a senior manager in a big organisation and was allowed loads of flexibility way above what I got and I was very lucky, didn’t seem...

Some things I had as reasonable adjustments over the years (gradual onset ME meant I was undiagnosed for at least 7 years and I retired early 3 years after ME/CFS diagnosis) 1 reduction of hours (and pay) to 85% of full time which I worked over 4 days with a day off on Wednesday 2. Periods of...

I think there will be some useful material on ME association what is ME on the website - it is based on the purple book https://meassociation.org.uk/about-what-is-mecfs/

Great post @Woolie. Put aside time for joy - yes seems ableist. Who’s to say that for me, where things are at the moment, several hours spaced according to when I can manage moving stuff out of rooms in my house so they can be redecorated isn’t going to result in more joy than visiting a local...

Friend with poly myalgia was on steroids for some time to start with but was keen to come off asap due to side effects and has now been off for a few years.

Hang on 2/3 recovery that sounds distinctly PACE à la Chalder Strain needs to read the purple book @Russell Fleming can MEAssociation send him a copy and ask him to do the CPD module. @EducateME

What is the source of the video @leokitten?

Sounds like Dr Strain would benefit from doing the MECFS CPD module. Perhaps a copy of the MEA Purple Book as well...........

Under served not as I read it undeserved although

Interesting response - do you want an appointment or don’t you - would imply you’re not the only person who had that experience

I thought they were aiming for the nanoneedle to be something that would eventually be cheap and widely available so if they can’t get the people with other illnesses to them are they working on taking the nanoneedle to the clinics where those people are.

I don’t think there’s any detail at all on there from GP interaction. Other than fatigue........ there is a report from my consultation with private ME specialist with some details. Even after the GP received that I didn’t have any discussion with them about ME......

Just to say I appreciate your input on professional experience Joan :thumbup: