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I use cuticle oil to improve the condition of my nails I have ridges that are more noticeable nowadays. Buffing the nails makes them a bit smoother or a clear base coat of polish if either of those is tolerable

If it was patient centric it would say online as default, the approach taken of breaking a one day event into 3 zoom meetings over 2 weeks by the James Lind Alliance meant that no one had to travel so no additional energy over and above the actual participation, and no financial costs. I...

Agreed on hybrid meetings. Unless everyone is wearing a headset and the meeting is disciplined with no talking over or side chat it is very difficult to follow. The people in the room have to behave as if they were all on a zoom. also just because someone can manage travel doesn’t mean it’s...

Also on this point of LC people not getting ME diagnosis it’s highly unlikely to be something LC advocates would be interested in engaging with much less promoting to TV as their focus is on getting LC accepted as an occupational illness - evidenced by the recent BMA paper.

Yep both definitely happen for me. Both physical and cognitive. As well as getting physically drained mostly linked to orthostatic issues standing for say 10 minutes will do it or sitting for a meal out. I experience cognitive issues during activity eg if I’m socialising with family or on a...

@JemPD interesting idea of approaching Ed Stafford. Maybe picking up from his approach of engaging with people to get their first hand experience he could spend time with some people with ME, their family in their homes. to the extent that would be possible.

On NICE implementation I just reiterate my usual point, there are places, ICBs now, that have literally nothing for people with ME/CFS they would, if diagnosed at all, if referred at all be directed to generic mental health/pain provision. I suspect that the long covid people we hear of who...

It would definitely be hypocritical

Not sure who is in editorial control of panorama these days but it’s unlikely to be the same people as 25 years ago so I don’t think any assumptions could be made. I think no assumptions could be made about any journalist or team’s attitude towards ME so that would need to be thoroughly explored.

I agree there’s a risk that certain “personalities” would be included. I’m not sure that they will be off the scene any time soon though so if it is worth doing I’m not sure there’s any point delaying. I don’t think there’s any less risk of them being involved if the topic was long covid given...

Should be aimed at channel 4 Dispatches just as much as Panorama

So around 4.5k dollars over a year. Someone must be making quite a bit of money there.

I guess it’s good to have it in a paper that pwME were motivated by altruism to support pwLC.

I thought the severe one looked to be still increasing somewhat. unsurprising if people are getting wrong advice about pushing limits.

I would imagine that the numbers are difficult to pin down for different reasons. some people may be experiencing remissions rather than completely recovering which of course nobody would be able to distinguish until the remission ends. People with LC/ their medics may not be considering that...

They might not respond of course but may be worth trying

@chillier this work seems to link up with the stuff you’re doing if you’ve got any energy for it maybe worth emailing them to discuss from PWME perspective??

I agree coaching could be beneficial as long as it’s not commercialised life coaching type approach. However for some people with more severe ME support from an advocate who could actively get involved in helping to sort out bureaucratic issues may be more appropriate. be interesting to see...

Yeah syndication of articles is pretty common anyway not just to outlets under same ownership.

Transference :whistle: