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Thanks Adam I appreciate you doing the clips. I posted your tweet on my FB and recommended the programme to friends and family any general public suitable pieces like this are the best option for trying to increase the level of awareness those around us :thumbup:

It is a storm in a teacup. But it is galling as well. I’m grateful for @Hilda Bastian responding on social media.

Oh I can think of two or three persons who would be up for doing that to ingratiate themselves further with the eminent ones.

So I think this is what @PhysiosforME have highlighted as symptom contingent pacing as opposed to time contingent pacing, symptom based picks up from E Goudsmit etc. One patient centered the other one size fits all push through.

Ugh

With so much covered in the programme I think it is a positive that there was a segment on long covid and that MECFS actually mentioned and good points made. I agree with the comments about Dr Strain. Hopefully his contribution will help some lacking in awareness see ME in a different light.

:rofl:

Every so often he fishes for a fresh lot of replies from PWME to show to colleagues as examples of how terrible we are

Interesting @Kitty i had in my head from somewhere, probably watching OMF presentations 3 or so years ago that the aim was for it to be a diagnostic tool.

Exercise for the sake of it is such a privileged perspective isn’t it. What about people who work in physically demanding jobs filling Amazon orders or washing and dressing elderly frail people. What about people who rely on public transport. They don’t have any scope to ‘resist’ physical...

Given they lose such a high percentage of tribunals so have to pay the benefits and the cost of taking the case to tribunal, the approach of taking so many cases as far as tribunal can only be cost effective if seen in terms of how many people it deters from claiming or deters from fighting...

Yes we always have to take a step back when reviewing content about MECFS aimed at the general public or MECFS patients generally remembering that as people engaged in the ME community, especially those who have been for decades, we aren’t that general audience.

I got a text from GP surgery and sorted booking by phone just as I did for flu in the autumn, no letter received

Thanks for the laugh

Good point about what happens in practice @Wonko i asked in advance for my ESA assessment in 2018 to be recorded but when I arrived for the appointment the equipment didn’t work and they didn’t have a spare.....

One way of redesigning the role to reduce the impact on your boss might be if you have another maybe relatively new team member who has potential maybe to get them to work with you so they can learn from you and also get the opportunity to cover for you when you’re not able to work. So you would...

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