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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...

Apologies, I did not mean to suggest that you, specifically were; I am extremely concerned about the FND mission creep. This. The FND diagnosis may well have legitimate and helpful uses in some instances. As we have both agreed, ME/CFS is not one of them and, as someone else has said it is on...

Thank you for the clarification @Jonathan Edwards and apologies for rushing to judgement. If this diagnosis is helpful to some people, does it lead to suitable treatment? My concern is when rehab is a hammer and everything is a nail and where FND is used as a full stop, not a comma and further...

I have just looked up this thread, and am physically shaking with anger at this whole FND approach. This. Questions need asking, very firmly. How did MEA decide that an FND researcher would be the best fit for this work? How is this allowed to continue? I have just seen this letter linked...

I have just looked up this thread, and am physically shaking with anger at this whole FND approach. This. Questions need asking, very firmly. How did MEA decide that an FND researcher would be the best fit for this work? How is this allowed to continue? I have just seen this letter linked...

I love your descriptions @Kitty I am stealing this; as it sounds like something a Victorian gentleman would say before slapping someone with a glove and challenging them to a duel "Damn you unplanned visitor, for you have caused me unspeakable payback - you shall answer for this!" Guess who...

Thanks @Hutan again, clarification appreciated. :thumbup:I am never quite sure how I come across so wasn't sure if this was helpful or a bit ranty!

Thanks for the clarification @Trish that is helpful and somewhat frustrating Quite. This seems to be a common problem. The DWP 's Back to Work plan is making the same mistake.