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If you’re dependent on a clinic for providing some support with employers or benefits claims you’re less likely to be filling in questionnaires at the end of your course of treatment saying it has had no effect or made you worse. You might give a neutral score or slightly positive, you might...

If it was me I would contact Carol Monaghan MP about this

Circling the rickety wagons of eminence

From Twitter she seems to be invested in the link up her group has made with UK Sepsis Trust which obviously must be an acceptable connection....... eta @rvallee this was the thing I saw ETA 2 and here’s the pinned tweet on sepsis trust. I’ve not watched the video yet ETA3 ok so maybe...

Nice one @TiredSam :rofl: I can report an increase in swearing but I suspect I already met the standard for being a sweary person before being included in the study :whistle:

As someone only diagnosed 5 years ago I’d say it takes time to understand the situation and listen to and hear those who have decades into this. It’s probably a bit easier if you’re one person looking for support and a community. If you’re a whole cohort you’ve got your own community there...

Yes @Peter Trewhitt i don’t think those who report relatively positive experiences of CFS clinics are all having the wool pulled over their eyes or have other conditions causing fatigue. I think it is quite likely that some staff within those clinics are either deliberately operating under the...

True and if you’re not face to face with a therapist probably at greater risk of them not engaging some humanity and saying you should actually stop. The robot therapist mentality is likely easier to maintain at a distance. And that opportunity won’t exist in a programme that doesn’t involve...

Agree - the BPS foolishness is no longer second hand through the example of how patients with ME or MUS are dealt with. Long Covid is well and truly in their domain as they see it.

Agree @Barry I would say that just because something is internet based doesn’t make it less likely to be harmful - people are subject to online bullying and get groomed into all sorts of unpleasant activities - even if there’s no engagement with a live person at the other end in some ways...

I think the internal vibration in the torso I experienced only very rarely is a form of tremor. It was similar to the normal all over shaking I’ve experienced when I’ve got cold in seawater or getting drenched in a very heavy downpour. But limited to inside my torso and not visible. in my...

Glove and sock neuropathic pain that I get is like my hands and feet have got low level electric charge running through them and they’re warm. It’s usually fairly mild in terms of the level of pain but gets worse whenever the temperatures are high at nighttime and definitely has a negative...

Abra ca bloody dabra

I think this is neuropathic pain?

I would imagine that’s because @dave30th had posted responses on that twitter thread that they’d rather delete the post so that his comments wouldn’t be seen.

That’s great :thumbup:

So you can sedate a patient up to the eyeballs with tricyclics - are these even proven for pain? but paracetamol and ibuprofen are bad. As ibuprofen and paracetamol, even the lower dose paracetamol & codeine are available over the counter and quite a lot is even available in supermarkets this...

I think both are important and needed to leverage more substantial funding from public or private funders. We can’t wait for research breakthroughs to overthrow the current status quo in how people with ME are dealt with. We need to get to a position where ME patients are not at risk of harm...

My tactic is a physio gel pack frozen wrapped round a couple of times in a cotton scarf. Applied to the back of my neck. I find it very effective at cooling me down. If extremely hot a second pack deployed to front torso like the opposite of a hot water bottle. If able to take a bath lying...

Sorry I have sent us off topic. Still off topic Clive James autobiographical book Unreliable Memoirs caused me to laugh so hard I snorted while reading it on the tube when I lived in that London.