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Sorry @DokaGirl not been on during the day thanks to @Binkie4 for answering your question

Glad I spotted this welcome @PhysiosforME :thumbup:

@Marit @memhj just tagging @dave30th in as he wasn’t on your list

Drawing a pentagon, writing a sentence. What season of the year is it. Being told 3 words then asked to repeat them a few minutes later. Did lots of appointments with parent 20 years ago - they used to sit in the car and say what year is it on the way to the appointment. Knew that was the...

spotted this on twitter seems that a small group are getting together to advocate for ME patients to their profession.

This is a good point I’m not sure M.E. Association have fully taken on board the extent of the move away from CFS clinics and people being referred to generic community pain services instead.

We had some great banter about it on the thread on here too I think

I sort of managed to get away with going to the CFS clinic although in retrospect I did end up increasing activity while I was doing the programme at least I knew enough not to try going for daily walks or anything like that. And at least it is on record that I’ve done that so I can’t have not...

I think that’s likely to be interpreted in practice as having gone through an NHS CFS clinic. ETA see @Trish already made that point. The powers that be can’t argue that there is anything that could “help” if you’ve already gone to the clinic and it hasn’t helped. It’s rather Russian...

Great idea for a paper. Thanks all. This could have a real impact.

The bit about COPE is interesting- sorry I can’t cut and paste it - whether the anonymised study where retraction seems to be being considered is SMILE

https://www.meassociation.org.uk/2019/06/meeting-with-minister-raised-important-concerns-about-welfare-benefits-for-people-with-me-26-june-2019/ Hopefully DWP will take on board the issues raised

Or FND?

Ive never seen recurrent sore throats and swollen lymph nodes referred to as “Oxford symptoms* before. Not sure what the point is? ETA. In the ICC these symptoms are referred to in C1 which covers flu like symptoms.........

Wondering what projects they have in mind I couldn’t see anything about that

Even with gradual onset mild ME it isn’t a question of being fatigued and gradually getting worse. The viral flu type symptoms sore throats swollen glands were there too just not so severe to be incapacitated for more than a couple of weeks at a time.

Emma Joy is on social media

Great project

Doing a great job @Michiel Tack

They just see it as a white lie for our benefit. Unlike the white lies and distractions I used when communicating with my parent who had severe dementia this is not compassionate in the interest of the other person. It is prioritising their own unhelpful beliefs over and above the lived...