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Oh. I see! Apologies, totally misunderstood the question(s). If i have understood correctly, we want to find out: • is there any kind of centrally held list of pwSevereME who have been/are currently in hospital? • Is anyone keeping a note of number of pwme being diagnosed with FND? how do we...

FowardME is a discussion forum for various ME groups, as opposed to any kind of coalition with staff to take any action. While we would all assume that they are best placed to take this on, they are not actually an action group. What might be helpful would be to get Not Recovered (the...

This topic has been split from UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023 Ah. Yes. I was going more with slight of hand; 3 card monty Don't look over here while we stop counting Long Covid and rename it anxiety - which is...

I was also starting to think that there are a number of strands that seem to be knitting together, so I am grateful for someone else saying it out loud. I appreciate knowing it is not just me that is seeing a rather alarming picture starting to come into focus. Not helped by the charities not...

This is really well summarised; they are attempting to rehab people with an ongoing, untreated illness. Where else would this happen? How is is this situation allowed to persist? Why is there no professional curiosity as to how well their management strategies work long term? Why no yellow...

This is utterly unforgivable and is the exact opposite of the hippocratic oath. The mental gymnastics that they must have to go through to get to the point where they are ok with this, let alone perpetuating it and thinking they are doing any kind of good. And yet we have faulty thinking? When...

I respectfully disagree. TW: I started to hyperventilate when I was turning blue and pretty much dying with pneumonia and double pleurisy 16 years ago, and the switch in my brain that says "you can breath normally now" never switched back on. I proceeded to over breathe for five years, until I...

at a cost of £90k How much is a fully funded PhD? or a clinical trial? or even a pilot study? or even collecting wearables data from volunteers?

I was reading this and thinking that it is actually a helpful idea, as someone who lives with PTSD and other MH issues from the multiple things that caused my ME. Right up until this point: as this would include remembering to take any medication...oh, wait! Can't take pain meds or...

So... All the things ME robs us of, her company can give us back through That is the most "jolly hockey sticks" way of describing CBT+GET I have ever heard. This and the whole "NICEly" branding is the most patronising, paternalistic "we know best" approach possible. I would be beyond...

I have always had mild anxiety and it would on occasion upset my stomach - it had a very specific trigger for me so wasn't a major issue. Then I got a nasty stomach bug that was going around where I worked in the early 2000's and never properly recovered. Shockingly (!) my GP at the time could...

Excellent article. The additional issue we face is that sharing articles such as this or the excellent Long Covid Advocacy 3 part series: https://longcovidadvocacy.substack.com/p/professor-catastrophe-simon-wessely Make us sound like the militant conspiracy theorists that he has painted us...

How are we supposed to push back on any of this?

Weirdly, I found since getting LC they I miss words and/or letters out when speaking, typing or hand writing. The above examples @It's M.E. Linda refers to as "meep speak" and it always amazes us they we cna still understand each other perfectly "all the right letters, not necessarily in the...

Much like if you do what you have always done you will get what you have always got. Which seems to be what they are aiming for... ?

This explains so much.. :rolleyes:

Very well put. except it feels like the people in these fields seem to want to make it so, which might be a large part of the problem. The wish to make the uncertain, certain. as you suggest it is about balance; you can't run endless tests and we are begging that clinicians cease stopping at...

Agreed. Surely all other possibilities should be ruled out....?? This is like going to a doctor having a sore leg and the doctor saying "exercise it, it'll be fine" without x raying it. If it turns out to be broken, exercise will do permanent damage. Further tests do not make the patient...

This. Exactly this. Thank you for voicing my thoughts on this so perfectly @Kitty

Seconded, really excellent work. "patient as the receiver of the clinician's wisdom. It assumes that clinician input makes a significant difference to disease course and that data, to be effective, has to be held and analysed by the clinician, with information fed back to the patient. However...