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Does adrenaline count under exertion? Not triggering that is my everyday task, even when mentally and physically curbed the comedown is brutal

Does decreased baselines particularly permanent get a mention ANYWHERE??? Sheer amount of lies is making this a mammoth job, thanks again, also last thought where is the evidence of guaranteed restorative rest???!!!!

The Sheffield one was the first one I looked and the last as its so shockingly bad I can't take anymore at this time, but it's a great example of how damaging and dangerous use of the dysregulation model is by service providers, so grateful to everyone who can challenge/critique these

Incredibly dangerous as if disabilty has ever or will ever be that simple, ignorance cost lives, not just us and the other conditions pointed out but learning disabilties also regularly come with a whole host of medical issues and wide range of severaties, intertwined with their diagnosis, not...

Am I somehow missing the point or this, because disagree and not relevant are two completely different things yet just one tick box, how is any ‘assesor’ or new health/social care professional supposed to know which is which, I.e bedbound patient : disagree = doesn't need accommodations to...

Facing the first winter since the vaccines started without one, first turned down in spring so very much unprotected (vaccine wise) bedbound and unable to find a service so far that will come to me even paying for it myself, at a complete loss of what to do, mum contacted ICB board and they have...

Hope their comes a day soon as possible when we can answer questions with information like this instead of ‘behavior patterns’ etc. Not a ‘structured thought diary’ but things like this and whatever else is yet to be discovered https://www.omf.ngo/haptoglobin-pem-mecfs/

The audacity of calling any of this treatment is beyond me, complete fairytales, their faith in ‘if you do this’ is no different to the lightning process of believe it hard enough and it will work, pacing is survival in the face of nothing else and even then it can't guarantee this disease wont...

He was my consultant, don't have the brain or energy to go into it, but royally pissed off he thinks he's in any position of writing about diagnosis and management, to be fair I haven't read what he's written, particularly about severe m.e., he's been retired for years and I can only hope...

In the FAQs it says other projects of around this size commonly found around five causal links, does the fact they found 8 have any significance/meaning about the disease or research?

I have no idea where to put this because new threads are starting but I'm so happy to be here with everyone and to be exhausted for a good reason for a change, didn't regret at any moment of being part of the study but feel this the best result I was reluctantly hoping for, looking forward to...

Transported right back to 2006/2007 where there were team meetings with different people coming together about how to solve the problem of me, nosediving into severe M.E, insisting I colour in paper charts about activities/energy expenditure, spoiler alert there were 2 maybe 3 meetings until it...

Disgust and rage doesn't even cover this, torn between wanting to post about this everywhere or ignoring and not wanting to spread the harm, don't know which is best, using Maeve is particularly sociopathic when this is what killed her and so many others, and would be the death of me given the...

Still time to get a new mug supporting OMF for the day https://omfcharitymugs.teemill.com/or try and win one or something else in the raffle raising money for me research uk https://rafflecreator.com/pages/74106/raffle-for-me-2025

Petition update 20th April 2025 https://www.change.org/p/save-karen-gordon-from-dying-of-malnutrition-and-dehydration-due-to-nhs-failings/u/33449974

Apologies if this has been posted elsewhere, or isn't the right place for it, thought it was very well written and particularly important in light of potential new services, honestly seriously concerned about services falling back on old useless ways...

Wasn't sure if this has been posted anywhere else? ‘There is no current national commissioning guidance or service delivery models in existence for ME/CFS services.’ ‘The Post Covid and ME/CFS services stocktake has not been able to demonstrate an ‘in depth accurate overview’ as commissioned.’...

I think this is also why I'm so triggered when anyone says teenagers and children have better chances/outcomes because I was 15, on top of everything else the lack of belief lifelong severe/very severe could happen to me played a part, even though it was happening right before every ones eyes...