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And in many cases, including the conditions you’ve mentioned above but also others, not giving the correct diagnoses or not referring onwards, can have severe or even life-threatening repercussions for the patient. This may be true in many other conditions & when doing differential diagnoses...

Yes, you are right, and also it is still a diagnosis of exclusion from NICE’s point of view, as far as I can see. (my bolding below): the NICE guidelines state: 1.2.2 Suspect ME/CFS if: the person has had all of the persistent symptoms in box 2 for a minimum of 6 weeks in adults and 4 weeks...

Hmm.. not really. ANS dysfunction, ie dysautonomia, is found in many conditions which have been demonstrated to be caused by a physical pathological process outside of the brain. “Examples of diseases in which secondary dysautonomia can occur include: Diabetes. Parkinson’s disease. Multiple...

This only describes mild & moderate PwME though, surely? I think I’ve seen you mention this elsewhere too when talking about Ramsays disease, and how it was about variability rather than fatigue - and I felt confused then as well. PwME who are severe don’t have variability, I thought? Not huge...

Yes I found it useful before in terms of bringing down heart rate & reducing palpitations. That reduced the dizziness. However, it didn’t change my functioning a lot, because I still felt very exhausted and had migraines & severe headache after every exertion, sensory sensitivity, still got...

Cardiologists can prescribe it off-label for PoTS / inappropriate sinus tachycardia / dysautonomia. The cardiologist wrote to my GP, who prescribed it. (It’s not in the NICE guidelines, which is why it’s off label. I don’t even think PoTS and IST has its own NICE guidelines). After heart...

No. (Been taking for a couple of years now).

For pretty and comfortable clothes, I buy trousers from a site called ASOS - not sure if that is available where you are. But they have a large selection, just typing in “trousers” brings up lots of trousers which have elastic bands and are a pull on style, and no zips / buttons / other...

I tried this when I was in hospital. (The shampoo cap). Not sure if it’s the same one, but it actually makes your hair quite wet, and then I was left with long wet hair and no hair dryer! I was shivering for about 2 hours! So incase anyone uses the shampoo caps: they actually do make your hair...

I just wrote a blog post about beauty and using makeup when you have very low energy and chronic illness. I thought PwME here might enjoy the blog! :) https://rosarainbows.wordpress.com/2022/01/04/makeup-and-beauty-tips-for-low-energy-and-chronic-illness/ I’ve recently had a little bit more...

Thanks for your post - it was interesting. How much more expensive is it per person, @Simon M? I know DecodeME was given 5 million pounds to do its GWAS study, but how much more would they need to raise in order to do whole exome studies (and how much would costs need to reduce in order for it...

I edited my earlier comment, just to be clear that severe ME was my diagnosis at the time (it is not anymore), but I had severe symptoms and in particular the light and noise and touch / pain sensitivity. It was these sensitivities that affected my stay in hospital and would’ve made things much...

Hi @Jjess I live in London, so although I do have a hospital I would recommend who have been brilliant with severe ME (my diagnosis at the time), I don’t think it would be much use to you? Once you have a hospital sorted out, you can try to find out who the surgeon / anaesthetist will be. Then...

Yeah! I think it’d be good to have it all in one place on a new thread.

I don’t go on social media much. So I don’t really know the effects of the new NICE guidelines. Has much changed? Are clinics (or GPs) now seeing severe ME patients more than before? And providing home visits and personalised care plans and support with aids etc. Are people being treated better...

@strategist I have a friend who was going through a process of diagnosis for channelopathy, so I did some reading to support her. so I just wanted to mention (just incase you didn’t already know), that if you do suspect a channelopathy, it’s probably best to get it checked when you feasibly...

Yes, almost constantly after exertion to be honest. This is my main symptom. (Then there’s the light & noise sensitivity, migraines/pain and so on.) (however this may not be as reassuring to you given my recent diagnosis!). This is what I call fatigue, extreme tiredness, etc. hence why I started...

I’ve been thinking more about this the past week or so. I don’t think your first point will turn out to be correct, because I went searching about this topic on this forum. Several are members only threads so I won’t link them here. But there’s been several studies done on PwME who have had...

I was diagnosed with probable metabolic myopathy, with an ME-type picture (And mitochondrial myopathy is one type of metabolic myopathy). So according to the doctors, these kinds of conditions can sometimes look like ME, and present with the symptoms of ME. Including PEM. I have crashes both...

I had my booster a few days ago (Pfizer), I felt more exhausted the next day and had nausea. Also that arm was hurting a lot, but I always get after vaccines. I’ve had a long nap today as well. But it’s been fine so far overall, the 2nd AZ was better than the 1st AZ. And this booster has been...