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I would question the statement that 'we should be grateful to patients who volunteer...'. I am of course very grateful to those who do so in a well informed way. I am not grateful to those, if there are any in this context, who have an axe to grind, or who think they know better than others or...

I guess that's what I meant. I agree I wouldn't expect ongoing liaising. A letter to my employer and later to the benefits agency would have been helpful.

Yes, I was diagnosed by GP in 1990. There was no referral possible.

So how do people applying for benefits get reports from their specialist to include in their application? And who is supposed to do the liaising with employers and schools if not the specialist nurse?

Authors: Narratives of recovery from persistent fatigue: a stepwise learning process Hannah Linnros Anna Andreasson Anna-Karin Norlin Lars-Christer Hydén Affiliations 1Clinical Department of Pain and Rehabilitation, Region Östergötland, Linköping, Sweden. 2Department of Health, Medicine and...

This thread is too long for me to read, so I'm adding my few comments to the version in the opening post. Maybe it's worth adding something about the fact that many pwME, particularly those housebound or bedridden, currently get no medical care at all. ____________________ Suggested Referral...

Can anyone who takes part in these sessions or watches them afterwards report back on whether they find them worthwhile?

With inclusion of Fukuda diagnoses and the DSQ scale that lists fatigability symptoms and calls them PEM, I can't take this seriously.

Should there be some option of self referral for specialist domiciliary care for people with severe ME/CFS whose GP refuses them care?

Yes. I fear it's too late. But I think we should try, if only to get our objections on the record and distributed widely. There's a lot more to come. This is one on symptoms is just the first of a set of PROMs from this project, the ones on PEM and function are much worse, and will doubtless...

I have said this before, but I think it bears repeating given the crap this project has produced, and discussion elsewhere on the forum about choice and openness about patient advisory groups: When Sarah Tyson via the MEA put out a call for volunteers to join the project PAG I applied. I...

Maybe give us another day or 2. I haven’t been able to keep up with this fast moving thread and was hoping to do so this weekend. But I'm sure it's excellent anyway with so much input. So ignore me if you need to get on with sending it. We can work on an S4ME fact sheet version later if...

I think in the perilous situation pwME are in, and with the past history of the CMRC including BPS promoters, it is reasonable for its PAG to have a way of informing pwME of their stance on ME/CFS science and medical and care. How otherwise are we to trust them to represent us fairly and...

Advertising. The lead author declares a conflict of interest.

I hope this means muscle biopsies with useful material produced will become much more useful as part of ME/CFS research.

I wonder whether in the UK situation it may be possible for the NHS to be required to use a local private hospital or hospice for people with very severe ME/CFS, given that I understand they tend to have more private rooms and possibly quieter environments and more capacity to be flexible with...

Thank you for your work on this, @Jonathan Edwards. I think this thread serves a dual purpose, or possibly multiple purposes, not just your work with Forward ME. For example, I think it would be a good basis for a fact sheet or article to put on our website when we have one. It would need to be...

I've read part of it. I think it does pretty well what it set out to do, which I understand to be a resource produced by and for young people to share their experiences and what they have found helpful in managing their daily lives in general terms. It reads to me as gleanings from a support...

That sounds useful, Kitty. Do let us know how you get on with it. Does it reduce brightness or just heat? And does it reduce heat loss outwards in winter?