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I find it very interesting although I don't allow myself to get my hopes up about anything anymore - not since Rituximab. To my mind there have been too many researchers that seem to think that something is wrong with blood or blood vessels in ME -Ron Davis, Fluge and Mella who thought there was...

I think if I was submitting a claim for ESA or PIP now I would at the very least include a copy of section 1.17 from the NICE guideline 'Care for people with severe or very severe ME/CFS' with my claim form. I think that section would help with various descriptors particularly if you have to...

I don't think I put it quite as politely as that @JemPD as I was pretty fed up by this point and yes I just addressed the envelope to the address in Wolverhampton that I'd sent the form to. I'd written quite a few letters by this point to both the DWP and ATOS as there had been problems with my...

Yes that's right @JemPD - when you've received the copy of the HCP's report but before you've got the decision if there is anything in the report that doesn't look right then you can write to the Decision Maker but you have to do it fairly quickly. I used to spend a lot of time on the Benefits...

I think you could use it to try and get a longer PIP award @Peter Trewhitt particularly if you've been ill a while. On the claim form you could make a case to indicate that the prognosis for you is poor because there are currently no treatments for ME/CFS, quoting the NICE guideline, and that...

Hi @Maria1 I'm 54, have only just entered the menopause and decided to start HRT a couple of months ago after trying other things without success. The last year or two I'd begun to get horrible new symptoms such as really dry, painful eyes, mood swings and being very irritable, together with...

I emailed my MP, Clive Betts, on Sunday before the template letter appeared so have had to email him again to ask him to support the APPG letter. I've had a reply back to say that he will add his name to that and is also doing his own letter to NICE. He had been previously supportive, which...

In the interests of science I've decided to be a guinea pig and post my story which can be found here: Members only - Meg22's story | Science for ME (s4me.info)

I agree that a thread with perhaps a short synopsis of people's stories would be a good idea but it can be hard, particularly if you've been ill for a long time, to get much across in a something short so I think there would definitely need to be some opportunity for people to post more if they...

I'm a bit unsure of the best way to post it @Trish It's currently in the form of a Word document so I could post it as an attachment otherwise I'd have to break it into several posts. Brain a bit rubbish today.

I've recently written my story but now I've written it I'm a bit unsure what to do with it. I'd really like someone - a journalist perhaps - to make use of it and have sent a copy to the ME Association and my local group. I've been unsure whether or not to post it here because as @Robert 1973...

I've got a supportive private doctor whom I've seen for years - I originally was granted DLA HRC & HRM based solely on her report as my GP wouldn't support me then so yes the DWP will accept reports from private doctors. That was years ago though and it's different now. It won't be DWP that...

Years ago I knew a retired nurse whose ME had actually been triggered by being given the Hepatitis B vaccine at work and there seemed to be a lot of other healthcare workers similarly affected. I think the ME Association & Charles Shepherd have had a longstanding interest in the role of...

I won't be having the vaccine. I've had several adverse drug reactions some of which have made me permanently worse and the only antibiotics I've ever had induced anaphylaxis which developed over a day not 15 minutes. I know from bitter experience that if it does adversely affect me I'll be left...

If it's any consolation @ladycatlover I was thrown off the sheilding list in the summer. I had a phone call from an obnoxious GP at my practice whom I've never spoken to before who told me I was at no greater risk from Covid than anyone else. I tried to explain that I had severe ME ,which is...

I'm still having mostly Ocado & ASDA deliveries as I think I have still got priority access with them and seem to be able to get slots fine at the moment. I have registered with Waitrose though and had a handful of deliveries from them since the summer as I prefer Waitrose stuff to M&S but I've...

I've just checked my ASDA account and they have extended my priority delivery pass with free deliveries until March 2021 which is a big relief for me as it was due to expire on 4th October considering how things are going They also seem to allow priority customers a weeks extra worth of slots to...

I've used the finger prick Medichecks tests for a number of years and always found them reliable. I've had different tests but the one I have most often is the Thyroid Panel which measures TSH, FT3 and FT4. I do this test about the same time as I have my yearly NHS thyroid review- the NHS test...

I had a similar problem accessing the ASDA site a few weeks ago @Wonko and thought I'd have to stop using them which is a shame because I prefer ASDA to Tesco now. It stopped working on IE - I'd just get a blank page with the ASDA logo at the top and when I tried to log on with the internet bit...

I don't know if you mean Olivia Blake MP who's on the APPG? She's had personal experience of ME and was interviewed by the Sheffield ME group as part of their 'Millions Missing' event - see: https://www.s4me.info/threads/me-awareness-day-week-month-and-millionsmissing-may-2020.15083/ Perhaps...