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Can I say that's really interesting Snowdrop without appearing insensitive? Of course I'm sorry to hear that you have OI now, particularly as it involves fainting which is so dodgy in a bathroom full of hard surfaces. But a history where your (later life onset?) Reynauds progressed and then...

Hi Daisybell thanks for the reply yes I have certain fingers and toes which like to play up (shoes and gloves cannot be very close fitting), though as I've said it seems to have nothing to do with stress or tiredness for me, only cold. Im embarrassed to say I also have the problem with nipples...

@Jonathan Edwards Don't worry, I wasn't taking much notice of that website, I just tacked on to this thread because I didn't think it was worth starting a new one. My fingers and feet do go a waxy white colour and can be numb. Then when the blood comes back they can go hot for a while and more...

I definitely have Raynaud's - I 'inherited it' from my mum along with a lot of allergies (well before ME days), particularly skin allergies. In my case it affects more than my hands and feet, and is easily triggered by moderate cold. Other triggers - I don't smoke so that isn't aggravating it...

:hug::hug::hug:Rosie I'm sorry you are having such a very rough time. Please take care of yourself and I hope things improve for you and your mum very soon. No need to reply. OTH

Thanks for the laugh @Jaybee00, I needed it.

I had my 1st Pfizer last Friday. Only very trivial and expected side effects of a sore arm and a mild headache for a couple of days. I realise the side effects are likely to be more with the 2nd jab. I can uncross my fingers now I think. I hadn't had any vaccinations in 16 or 17 years and was...

Just want to say that I look forward each year to donating for this, and now to Brian Hughes (probably got the name wrong, you know who I mean(edit ...maybe Keith Geraghty)). It's the most substantial way I can help our cause (apart from my will), and I know I'm going to get excellent bang for...

Done

Oh dear, it looks like the most likely outcome is that WellMe is going to be taken over by CCIS Tauranga, becoming CCIS Wellington. I am no longer a member of WellMe so will not be at the SGM where they will decide, but I believe CCIS Tauranga are the people who run the "Towards Wellness"...

I use the inhaler and find it makes a definite difference to my functionality during winter time (I've started and stopped it a few times to check, though obviously this is not 'science') . With the inhaler I have much less PEM and a little more time active/out of bed and no discomfort in my...

I agree that this is a vital question, and I have no doubt it will help if patients give a lot of input/a lead to researchers. There are so many fundamental questions about PEM, not only what triggers/exacerbates it, but what it is. Jason's previous work on PEM came up with key features which...

I saw an immunologist last week, and he told me Pharmac is likely to stop funding my Chromoglycate inhaler medication from October-ish and it will be import only. If anyone else in NZ uses it, you might want to stockpile some as far as you can. Sigh. It really helps me a lot. If I can get...

Major thanks for doing that transcript @Sly Saint, I know I'm not the only one who can't really handle videos, I find written material much easier. And that talk had some really good stuff in it - from the true facts about what doctors believe (wrong) and know (nothing),and her astute...

The TV version of The Handmaid's Tale would be far too intense for me, but I read the book some decades ago and thought it was very good. You can hear a reading of Margaret Atwood's just-published sequel "the Testaments" on radio 4 iPlayer/Sounds App for the next month. I enjoyed it a lot...

Anyone got any recommendations for Science Fiction audio books? I enjoyed the Martian, and suspect I would enjoy Ted Chiang ( he wrote the short story on which the film "Arrival" was based) if only he did audio books.

I look to smarter people than me for guidance on the importance of this. As a pwME with POTS, to me this looks like it could be very useful indeed. I know that talk of subgrouping gives rise to worries about throwing the rest/others under the bus, but it might get a large group of patients a...

Thanks @Simbindi that's really useful. I think it must be the Summary Care Record I was half-remembering. From a brief skim it does sound like getting control of that would be a smart move and a good start.

Does anyone know how to "lose" previous medical records entirely? can you refuse to let older records be used? I plan to return to the UK next year (2nd attempt) and am happy to bring my perfectly sensible NZ records. But my relationship with my previous NHS practice more than a decade ago was...

Just to be clear, are you saying it is not worth signing this petition? If so, is there a simple action that NZ/international PWME can take which will be helpful? Thanks