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Same here. The strangest one I get is a deep grinding sensation that goes all the way down my spine. It's as if the top of my spine (and nothing else) was in contact with rock that's being drilled at low speed with a heavy machine. The muscles radiating out across my back then start going into...

I agree, but... Arguably, it has made a difference. Twitter has been very effective at enabling people to get messages out about the existence of long Covid, the impact of the symptoms, the numbers of people suffering, and the whole controversy about GET. It's not going to change the minds of...

I've had the intolerance throughout, and the type of alcohol doesn't make any difference. I basically stopped drinking before I was legally old enough to start! The awful nausea and hangover would start within 20 to 30 minutes, and just isn't worth it. I also have what is probably a histamine...

Excellent piece of work, thank you so much to everyone!

Great letter – thank you. I wonder if a small clarification is in order with these last two sentences, as it appears that some people described as having Long Covid may have organ damage in addition to (or rather than) post-viral symptoms? Something like: What is particularly important now is...

:rofl:

"These results suggest that pain, which is the main symptom of this syndrome, may be related to alterations in nitric oxide levels and in oxytocinase and EDA activities in patients with fibromyalgia." [My bolding.] So why the inclusion of an anxiety inventory? I've no idea whether this work...

When you have some spare energy (ha! I know that's a joke), it might be worth starting to note any near misses or incidents were using the stairs or the bath puts you in danger? Then you could have another go at it. I had no idea how many falls, stumbles, or collisions I had until I was asked...

The various OTs I've worked with have been helpful; I probably ought to add, though, that none of them have made any progress at all on trackpad use, when you have a cat that insists on head-butting and squirming her way underneath your arm so you have to work with your elbow stuck out at a...

Worked for me – thank you! Excellent letter. :)

I read through the FAQ on the website this morning, which says it might possibly be delayed slightly due to the change in lead centre on recruitment.

In some areas, you self-refer – that's certainly true in our part of the midlands. You ring a central contact number that's published online, talk to someone about what type of assessment you need, and they arrange the appointment. You may be able to find this out from information published...

...and someone should invent a typeface that shows you need to read the thread title in Janey Godley's Glasgow accent. The Et's a' shite! thread.

"It’s why the doctor — who has been prescribing exercise “forever” for patients recovering from an illness — is changing his advice for the first time in 20 years." FFS! Nobody who knows the first thing about exercise would recommend it to anyone still recovering from illness. The volunteer...

It’s great that the work has been done, but surely 2-day CPET in its current form is never going to be useful as a diagnostic tool? Putting aside the ethical and practical issues, most ME patients aren’t going to get anywhere near VO2 max. I can barely get out of breath before my muscles start...

:eek: :walkingdead

Gosh, that's horrible – I've never had it from any of the whole bevy of 'em that I've worked with! They were all focused on how to do what you need to do without making yourself worse, and if it's still too much, question whether those things really are essential. They persuaded me after a...

In my experience of NHS treatment, OTs are the only healthcare professionals who understand how to deal with fatigue. They also know that people's natural response to post-viral illness is not to become fearful of activity, but quite the opposite – they always try to do too much too soon. I've...

I've only ever used a ferry once, due to a tendency to suffer from sea sickness even only dry land. It was the Oban to Mull boat. I'd been dreading it, visualising something about the size of a fishing trawler, but the vessel that pulled into the harbour was the size of a modest multi-storey...

Really interesting, thank you. I've often wondered which box I'd tick if I was only being asked about my autism (I still haven't decided).