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Many girls / women get diagnosed late in life because the signs don't get picked up earlier on. There can often be differences between girls and boys with autism. This is a pretty good article https://www.spectrumnews.org/features/deep-dive/costs-camouflaging-autism/ I pretty much spent my...

@Rosie oh yes I’m similar in the winter.. I don’t feel well in sustained cold temperatures at all. It’s just when I’m feeling very hot and weird head feelings - at that point if I am then exposed to cold, I feel good and “well”. But then a short time after that, the temperature needs to go back...

Oh my goodness. I had not thought that her advice was very dangerous as I hadn’t actually looked very deeply into her writing (I used to have her book but never got through it). But her page on Vitamin C is just unbelievable shes advocating high forms of vitamin C instead of vaccination for...

Hi @Rosie im just replying a bit more as promised. I was hoping to seek a neurologists opinion but unfortunately everything has had to be put off for a while until I get my stomach pain and gallbladder sorted out as that’s become more urgent. So I don’t have any news from the neurologist side of...

Thank you - yes that makes sense.

I think this study is really important. I often wondered why researchers weren’t looking into this. I don’t know of any other conditions (except perhaps PoTS alone - and even then, not to the extent of ME and PoTS together), where patients have to continuously be lying flat and feel absolutely...

Exactly - are those of us with underlying conditions or young and elderly people, not important? :(

I find that so strange. Why could that be? I hope that’s the case in London and other big cities. It really worries me as when you think about how many people come into contact with each other in for example London. Taxi drivers, doctors, Deliveroo drivers, restaurants, Tube/Public transport and...

Yes, and from looking at flights websites yesterday - lots of flights are coming into the UK from China every day, via Russia or Malaysia or Sri Lanka or even direct! and anyone coming from China has a much higher potential to be carrying Coronavirus since it is the start of the epidemic. I have...

Hi Rosie I would like to reply more to this later on, but yes this is one of my *most* prominent symptoms - that heat feeling in my head with headaches, inflamed sort of weird feeling. I thought it was just me! Will reply later with what I’ve tried so far / also seeing a neurologist hopefully...

@Arnie Pye could you ask to be switched to Famotidine? It works like Ranitidine. I was on ranitidine but taken off it within a few days. Then on double dose omeprazole for past few months and now consultant says I need to go back on a H2 blocker As my issue could be related to histamine and so...

Wow. What do we do when even our main charities come out with things like this? It’s so disheartening. And encouraging people to go to their local hospital ME service - so they can be *harmed* and made possibly (and permanently) disabled for the rest of their life? In a few decades when all of...

I did the same. Sent it to two connected GP surgeries. I’ve spoken to a few different GPs at the practices since then, no one got back to me about it or mentioned that they had read it. :(

Sure, I was replying to a post above mine about what can be done / what private doctors do when the outcome of the procedure is not what the patient thought it would be. So was saying a complaint to a GMC it one of the options that could potentially be taken, as private doctors are Also...

Yes. I think it is possible to report them to the GMC (General Medical Council), however I do not know how it works in practice and of course Jenny’s family will be going through an unbearably difficult time at the moment, so in all likelihood the last thing they are thinking about. Even if...

I’m so sorry to hear about what happened to Jenny :(

hi Adam just wanted to say, I really appreciate your advice, and you are absolutely right. I suspect if I go to another pain specialist, there's no guarantees that they won't be similar, and I don't want to put myself through that again. I will continue speaking to my GP. (I will go to my NHS...

@Sarah94 I typed into Google - my doctor says he doesn’t like to medicalise my illness. And it came up with articles like: https://www.theguardian.com/commentisfree/2015/may/15/over-medicalisation-nhs-patients-acting-like-customers “ The over-medicalisation of illness in the NHS is down to...

That’s what I thought it meant too. He said it a few times during the appointment. Putting all his comments together, I feel he subscribes to the PACE model of ME and also thinks the same of fibromyalgia.

Hi; sorry I'm commenting on this a few Months after it was first posted! I was searching the forums For small fibre neuropathy. May I ask, which neurologist did you see And where did you get the sympathetic micro-neurography test done? (Or you can PM me if that’s better). I hadn’t heard of the...