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To fellow ME/CFS sufferers in Hungary. I'm so sorry that we're all having to cope with this awful disease. But I have more optimism now than at any time since my diagnosis that competent scientists are researching our condition. There is room for hope! From Florence, diagnosed with ME/CFS twenty...

Thirty five years ago one of my closest friends caught glandular fever while at university and did not recover quickly. The advice from her GP (who was approaching retirement at that time - so perhaps of a generation to have qualified shortly after WW2) was to take a year off university, rest...

I'm afraid I have no direct experience to offer. But when I was unable to eat solids for an extended period after bowel surgery someone suggested I get a vitamix blender. Apparently you can chuck whole raw vegetables into them and a hot soup emerges (I doubt this is true of all models, and I've...

This is true for me too. My sleep is always prone to disruption but only during a 'flare up' or a 'relapse' following over-exertion (ie PEM) am I woken in the night by pain or flu-like symptoms. My night time sleep is longer and deeper when I also have a two or three hour nap in the afternoon...

Just to say that I've had similar issues since before my ME started. I've been prescribed prochlorperazine in the past, which has helped a bit. I would second what others have said about the fact that this can go on for weeks, sometimes months, and then resolve. I do not know if the cause is...

Thanks so much for responding @Samuel. I will take a look back at your old post and at the paper you mention (when I have available attention to do so!). I certainly recognise lots of what you talk about in your experience, though I suspect all of us are slightly different in this. It's beyond...

Many thanks @NelliePledge. I'll take a look at both of those.

I'm engaged on a piece of self-advocacy that has reached the point where I must explain how serious the effects of cognitive dysfunction can be in ME. I'll be writing a summary of my personal experience of this symptom, which has been crippling right from the start of my ME. I'm also...

My kind neighbour got wind of the fact I was having trouble getting my booster at home and offered to drive me to a local health centre where it was possible to book an appointment in advance. When we got there it was efficiently run and there was no waiting (even though I was fifteen minutes...

Many thanks @ukxmrv

Apologies @ukxmrv . My brain is always slow. Did you mean CCG when you said CNCC groups? Or is there another organisation I should be looking at?

Thank you @ukxmrv . I didn't know about the CNCC group websites. I will take a look.

Thank you @InitialConditions and @Trish My GP's surgery say they are currently fully booked for making home visits to deliver boosters but will keep me in mind and get back in touch if they find themselves able to do more. It's a good idea to contact the ME Association. I have posted a...

Does anyone know if there's any other route to getting a home booster vaccine in the UK other than your GP? There seems to be no mechanism to book one on the main NHS site. I had both of the first two vaccines at home, courtesy of the GP's surgery, but they have greatly reduced capacity to offer...

Many thanks @Kalliope I will pass that on. I like their 'Cautious Tortoise' recovery programme.

Does anyone know of good resources to help a mother whose child has recently been diagnosed with Long Covid in the UK?

Thank you @Joh. It was clearly a longterm, meticulously planned and well executed operation. It's useful to have the details.

Oh my goodness @Joh ! What a great achievement for all involved.

That is very helpful @Joh . Thank you. That sounds like a highly effective, co-ordinated strategy. Hopefully we can learn from it. Do you know if there was a particular patient group/charity that took the lead on this?

Signed. I'm not on 'social media' but have sent it to five sympathetic friends by email, explaining briefly why it matters. I'm not good at keeping up with things. Have we had any insights from the highly successful German patients who achieved high numbers with their recent petition? @Joh ?