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Hi, yes, it helped me a lot. It helped me understand myself, it opened up a whole new world of information. It helped my loved ones to understand me much better too. I got counselling from neuro diversity-aware therapists, which is different to the types of counselling I had in the past. It’s...

Hi @Simon M I did see one of them & had good experiences. But I agree it’s important to be clear what you want to get out of it - they can’t prescribe (or properly assess which ones you need) medication for pain, migraines, PoTS, dizziness etc, as you’d need to see a cardiologist / pain...

https://openaccess.sgul.ac.uk/id/eprint/107121/1/Mitochondrial Myopathy Review 19.11.12-1.doc “Unexplained gastrointestinal symptoms: Think mitochondrial myopathy” I came across this paper a while ago and saved it. It’s a series of case studies from the UK, about families which had...

Yes, well this is something I’ve been wanting to write about for a while but I find it hard to engage in this topic (outside of the emotional support forum). However I’m glad you brought this up. Ever since I read more about mitochondrial disease, and metabolic diseases in general, I have been...

Well, I definitely did feel a sense of shame when being told I had MUS. Going through the CBT trial, reading the booklet, makes you think you’re the one making yourself ill - or keeping yourself ill. So you have to try harder. i felt I had to walk more, I was told it’s a software problem after...

The walking stick came! I really love it. My mum managed to fix it to the right height for me. It does hurt my arm to carry it and put weight on it, but I’m hoping that with time it gets better. And I’ve noticed that when I use it, I definitely feel more balanced & less dizzy. I don’t know why...

Sorry I meant to reply to this earlier but forgot. yes you are right about the SNP chip not affecting whole genome sequencing. But it’s just one of the issues with general DTC (direct to consumer) testing that can occur. There are also problems with DTC whole genome sequencing as well. Just...

Yes, I still use the covid Zoe app to check local & national rates. https://health-study.joinzoe.com/data I think it’s the most accurate we are going to get tbh, even if it’s not fully accurate. (Until the ONS data comes out). They estimate 344,507 new infections every day atm. You can check...

Thank you @mango! This is really helpful. I hadn’t realised there were different walking sticks for different things. It looks like the Hurry cane is one of the best ones for balance. I love the colour as well. (Of course I would love pink even more but I can’t have it all :D) I’m going to order...

Hi, I went to a rheumatologist appt last week and he asked me if I could walk unaided, or used a walking stick or aids. I told him I could walk unaided (and showed him by walking to the door and back), but that for longer distances eg within the home I sometimes used a rollator for a very short...

How is the WAVE3 gene connected to the mitochondria? The amount of the gene product is raised in ME/CFS patients, and that then influences the mitochondria somehow? It seems like more and more researchers are interested in the mitochondria (& looking at muscle function / muscle biopsies) now in...

Which autoimmune diseases do you mean? (I have lupus and PEM or post-activity flares has never been blamed on lupus or any autoimmune illness, the doctor was always clear that those types of symptoms could not be attributed to lupus).

Sorry I’m a bit confused on which is the right thread, but if I understand properly, the DHSC is involved in / setting up various subgroups? I would like to once again bring up a Hospital Passport for ME. The autism hospital passport is one of the few things that usually gets taken seriously or...

Psychological trauma - but when I read about FND, the term “adverse events” is mentioned, and further reading revealed that FND can also be triggered by physical events or trauma such as surgery, vaccination and head injury too…Although I also read that sometimes in FND there are no...

I’ve been given various functional diagnoses too sadly (including for stomach problems). The thing about FND specifically is how they have a well rehearsed theory about it which is (from what I can see) mostly well accepted by people and a lot of patients. For some patients, it seems to explain...

Yes, I wonder if others here personally know people (outside of this forum, and outside of ME or long covid advocacy), who have been diagnosed with FND? As I know several. Two of them had a prior diagnosis of ME before being diagnosed with FND (but were never involved in ME advocacy), another...

I wouldn’t say this is the same as “hijacking”. It’s probably more that over the years, a lot of PwME noticed that they had another symptom too (as well as the muscle fatigability): that they felt worse after doing activity, not just immediately but the next day, or 2 days later. And also I...

There is a test for reactive hypoglycaemia, I’ve had it done before (via endocrinology). They take your blood, then give you a sugar solution, then take your blood again a couple hours later. So they can see how the glucose is affecting you. You have to start the test on an empty stomach, and...

Indeed. It’s only recently that I’ve felt this, and I have been disabled since birth as well. Yes, for my chronic illnesses I do want a cure, but I know that in reality it won’t happen. It probably won’t even happen that I’ll have a major recovery. So being disabled (& unwell) is a part of my...

This is a step I thought the U.K. govt / NHS would never take. But they’ve done it.. How can this be safe, when we have to sit in waiting rooms? and what about as an inpatient? What about after surgery? How on earth can this be safe? The most sickest people go to hospital. If sick people are not...