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@Wits_End i use Fish insurance, which was recommended to me by the wheelchair company I had a look at their standard insurance policy document and it says Exclusions: “Theft - loss caused by or arising from: i. Any person obtaining any Item(s) by deception. ii. Theft by the Insured, spouse...

This is amazing news! Thank you for posting this!

Hi @hellytheelephant, I can’t see your blog link?

The charitable foundations are not misleading - they are working closely with the national hospital for neurology for the majority of these studies. I can’t see anything misleading on any of their webpages. The same for the literature / scientific papers- it doesn’t make sense to say that...

I agree. They are two different conditions, and most people with ME don’t have it. But, my point is that people with mitochondrial disease can also feel unwell, so it shouldn’t be used as an argument to dismiss mitochondrial research in ME. As for whether they experience delayed PEM (as a...

Yes but in practice no one gets most of these conditions ruled out. In an ideal world patients should be tested for at least a proportion of them. If it was up to me, I’d say some/most of endocrinological, GI, cardiovascular, neurological & rheumatological - depending on symptoms. The problem...

@Jonathan Edwards the problem is you keep saying things that are either incorrect or inaccurate. On a science forum. First, you said people who have ATP problems don’t feel unwell like ME and they just have difficulty lifting an arm or a leg, (and therefore ATP problems don’t really make sense...

Yes, but that’s not the full list I was thinking of, as I was talking about a list taken from the MEA’s “purple book” (it was first posted on this forum on another thread by another member, I’ve just copied the photo from that post & attached it here), its a long list of conditions. for some of...

Yes, it is a different disease to ME. (PS I know this is off topic, so feel free to move this to a different thread if needed. And sorry that it’s long, I just felt I needed to write some things down). “Mitochondrial myopathies are a group of neuromuscular diseases caused by damage to the...

This is not true though. “Data were compared with those for healthy control subjects and patients with Myalgic Encephalopathy/Chronic Fatigue Syndrome matched for age and gender. Sixty-two per cent of patients with mitochondrial disease reported excessive symptomatic fatigue (Fatigue Impact...

This post and the next have been copied and following discussion moved from this thread: Circadian rhythm disruption in [ME/CFS]: Implications for the post-acute sequelae of COVID-19, 2022, McCarthy _____________ This is not true though. “Data were compared with those for healthy control...

Yes, there’s several others (non drowsy & drowsy ones) on prescription. I think fexofenadine is the one they’ll try next if Cetirizine & loratidine don’t work. Also you can take Cetirizine twice a day (pharmacist told me), if once a day doesn’t work well - but make sure you check that with...

I loved your blog @hellytheelephant! I loved your tips on getting started, like “reduce your mental load”. It’s all made me think about starting something creative and small again :) I used to do cross stitch, and hand embroidery, but I’d love to maybe restart machine sewing (maybe with an...

@daftasabrush you probably already know this, but many of these DTC (direct to consumer) tests are inaccurate. I looked into this a couple of years ago - I was told to do 23andME, and it came back with lots of weird results. So I read about it, and I found that up to 40% of 23andME results were...

Does anyone know if there’s an indefinite award for old style ESA? Or do they always assess every 2 years? I found out that it does exist for new style ESA: “New Style ESA lasts for 365 days if you’re in the work-related activity group. There’s no time limit if you’re in the support group.”...

We just had to fill out my PIP form again - but I have to fill it out every 2-3 years! The reason for this is because the nurse who assessed me when I first got ill, told me that many people with ME recover, so I could easily recover as well in the next few years. So she said she would recommend...

Im waiting for this drug to come to the U.K. I’m pretty sure it’s an acute medication that works on anti CGRP pathways? The good news is that there are already some preventative anti CGRP injection medications available in the U.K in headache clinics. Ajovy, Aimovig etc. They cost around £300 a...

Thank you very much @Binkie4 , @Wits_End and @Kitty for your help. Just thought I would update. Unfortunately it looks like I’m having some of the same problems as @JemPD with the sensory issues :( Before trying the stockings, I decided to try the leggings / tights as that’s what I had been...

To me this simply looks like a platform to connect people with neurological conditions, to the relevant therapists that could help them. People with neurological conditions usually need a multi disciplinary team, and not all of them get it. Especially in a time when it’s really hard to get...