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Agreed but NICE must have experience of seeking input from seriously ill patient groups. There should be a service standard for their questionnaires. The IT issues are fairly basic requirements that should be capable of being delivered even on a rush job.

Spot on Trevor Butterworth. Classic person in glass house throwing stones stuff from Horton.

Wot @Marky said.

Good point @Lisa108 easily out of breath.

On the last thread where we talked about a name someone said GenoME.

Looking back over those undiagnosed years. Two aspects from the ICC could definitely have been identified 2 - symptom exacerbation. - flu like symptoms and 5 lack of stamina I would have to spend most of a weekend in bed fairly regularly- maybe once a month. I would have flu type illness every...

I think this could be a great opportunity to highlight messages about ME to people working within the NHS. GP surgeries and the current CFS services should be asked to provide names. There should be posters about the research in surgeries. Local press should be alerted- Genetic researchers...

I think that’s what both Solve and the MEAssociations respective Ramsay Funds are for. May be simpler to get involved with one of those organisations.

That is a crap reply which is probably being sent out to anyone who contacts them. The point being made about the notice isn’t about the future review it’s about the current review therefore it has not been addressed. Will S4ME do a follow up asking for a substantive response on the first point?

if that is supposed to be new wording in response to the investigation it is yet more fudge

as soon as I see Chalder fatigue scale i think catastrophic ;)

In hindsight I reckon it’s possible Fluoxetine could have affected my health. My worst period of flu/colds/laryngitis was the 2-3 years after I’d been on it for a year. I realise that could just be a coincidence tho.

Definitely an improvement

This I think too. I had bad throats all the time and colds and flu but likely to be PEM episodes.

I found I’ve got dry eyes which is pretty common as we age so in my case probably nothing to do with ME. Worth getting that checked at an eye test because it is easy to alleviate with drops. I also find wearing an eye mask at night helpful. I try -not very successfully -to limit tv and online...

Babble babble babble babble ad nauseum

@Trish what a brilliant job you’ve done on this. I hope the researcher learns something from reading your letter

Good to see positive developments I haven’t absorbed any of the details but MRC working with the biobank has to be a step forward from the position 2 years ago. thanks to @Andy and @Simon M for your contributions on behalf of PWME

:rofl::rofl: oh gosh it seems so long ago there’s been so much of political and constitutional significance recently

I got a bit frustrated that MillionsMissing wasn’t happening in my city because we didn’t get healthy volunteers coming forward and none of the less badly affected people with ME stepped up to take a lead. As one of the less badly affected I decided this was the year to make it happen. It was...