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What is your current severity? I'm mostly housebound and spend a large part of each day lying down. I have the energy to prepare and cook simple meals but can do very little 'housework'. I have the energy to wash my hair once a month or so and have a bath once a fortnight. What triggers PEM...

I tend towards being too hot at night. The only thing that has worked to sort this out is using a very thin cotton filled duvet (from John Lewis) and then putting one of my old polyester duvets on top of it, using a thick one in Winter and a thinner one in Spring/Autumn. Weirdly this regulates...

I've had intolerance to alcohol ever since developing ME/CFS. Prior to getting ill I could drink moderately without problems. My intolerance means that even after drinking half a glass of wine I will develop large, red, itchy hives the following day. These are usually on the chest or stomach...

I didn't feel able to answer. I experienced three or four lingering viral infections over a 5-6 month period. I recovered from them all except the final one which was the worst. There was no 'well gap' following this last infection and the onset of ME/CFS. I do not know which of these...

Hi @yME Just to note that I too was recorded as having very low oxygen levels while recovering from major surgery some 12 years after I developed ME. I had not previously been aware of the problem. Levels improved after I was put on a nasal oxygen feed in hospital. At the time I was not in a...

Alcohol intolerance kicked in immediately after the infection that first triggered my ME and has remained ever since. I stopped drinking altogether as even half a glass of wine will lead to unpleasant symptoms the following day which include large, itchy, hives, usually on the chest and...

Thanks all. Yes. I'm sure your concerns are justified. But I'm choosing to address this problem, initially at least, as a technical matter. I've already been through the Kings' CBT mill, years ago, and did not benefit from their treatment. I expect that department will already have classified me...

I recently registered on the Kings College Hospital/St Thomas Hospital patient app., which is called MyChart. It covers other hospitals and clinics too. It asks you to list existing medical conditions. It doesn't list ME properly. I have sent the following email to the MyChart email address in...

When you refer to a dietician from Norway, do you mean @Midnattsol ?

For me alcohol intolerance kicked in immediately after the infection that triggered my ME and has remained consistent since. If I drink a small glass of wine I will feel the effects the following day. It will cause a headache, a sore throat and large, itchy hives, usually on the chest and stomach.

Done.

Are these similar to the exercises outlined in David Berceli's book? He calls them 'Trauma Release Exercises' and there are YouTube instruction videos on how to do them. I did the 'lying down' ones for a while and found them relaxing, if not transformative. The idea is to put the body into a...

Just to echo what Mithriel has said. I also have this issue.

Hi @Lou B Lou I registered and signed up for updates on the Decode ME website https://www.decodeme.org.uk There's an explanation about inclusion criteria on that site and I receive regular emails explaining what's happening with the project. I don't 'follow' social media, but if you do there...

Hi @Simon M I had a face to face appointment with Dr Weir last year. I don't know if he does video consultations, it would be worth ringing his London office number to find out. I went because I had a specific need for an authoritative medical report. He also had good general management advice...

Focusing on the DWP tribunal process. I am not a lawyer but I would imagine that, post the 2021 NICE guidelines on ME, there could be room to bring a legal complaint against the very nature of that process. I have not been through it myself but it sounds as if the demands of engaging with it...

I think this is an interesting question. My own experience could be regarded as immediate or delayed onset post viral infection, depending on how you view things. Both prior to original ME onset, and then when I dropped down to a more severe level of ME seventeen years later, I experienced...

I'm fortunate in having a GP who is broadly sympathetic. If I ever had to change GPs I would approach a new surgery well-prepared and with specific expectations. At an initial appointment I would present them with the NICE guidelines and copies of key relevant medical reports. I'd ask them if...

I guess some of this comes down to how you choose to classify things. I say that post Covid my ME has simply got worse. This worsening includes symptoms of breathlessness and chest pain that I did not have in my pre Covid ME. However I do not see them as 'new'. Pre Covid I got breathless...

Hi ahimsa For me it's simply meant taking a step down the ME severity ladder after a suspected Covid infection in 2020. Interestingly I had a similar onset pattern for the new level of severity after suspected Covid as at the start of my original ME in 2003. Both in 2003 and in 2020 I...