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I wouldn’t expect a heart surgeon to say they had perfected a technique based on their knowledge and the individual patients needs, but not share what it is, leaving other colleagues unable to learn from them, leaving patients unsure of what their operation involved. So I’m appalled that there...

Conversely - can we have evidence of the denial of the “human right to rehabilitation” which has sparked this unusual centre -ing of it? It’s just that, none of the patient communities I know have complained that rehabilitation has been withheld from them. I mean, even your Paul Garners...

Brava @Trish I’m sorry you’re having to do all this, but it’s appreciated. You’ve gone to town on them. It’s fascinating, it’s almost an ME/CFS Science blog!

In my minds eye I’m seeing a pie chart of how much of a document refers to “increase” of activity (say, 25%) vs how many pwME have “found” their established baseline (say, 10%) then increased beyond it by choice, without consequence (about 1%) The greatest work for pwME is getting used to...

Oh I’m sorry to break it to you, no they're not thinking about “patients”. The list of priorities are 1. Ensure my organisation looks good 2. Establish ourselves as experts 3. Get public sector cash 4. Sell product on basis of cost savings 5. Get accolades 6. My career/organisation improves off...

Yes and I hope they don’t try and do the Tyson Trap of quoting endless amounts of “how to validate questionnaires” and other non-relevant red herrings. Does this method work? Show workings. BACME - should try backing pwME instead.

It is all of those things. It is also a format which is discriminatory against pwME. The patient group this is aimed at does not need screeds of “it’s this, it’s that, but actually we don’t know but there was some study, but yeah” endless twists and turns. ME/CFS patients need short...

It’s allowed, being chronically ill, as long as you don’t claim benefits for it. Nobody cares whether you are working or not, they care whether you are costing them money. If you don’t have the decency to contribute to GDP, the least you can do is not take from it.

yes I always said we were getting half a story with the PROMS project. Now it is all clear. And it is poopy.

“The ME Association App” Oh really

I can’t do much but would be happy to do any admin type tasks such as compiling lists of emails/trusts/contacts etc Am thinking of a meme and # - BACME guide, it’s not NICE Stop putting us at risk - it’s not NICE

The retort to anything they “evidence” is in here https://www.nice.org.uk/guidance/ng206/evidence/g-nonpharmacological-management-of-mecfs-pdf-9265183028

It’s giving “we brought in a management consultancy to write a report on staff engagement”.

As the next sentence says, the retort to anything evidence they cite has already been written. By NICE. Checkmate.

If it’s not experimental they will be able to cite evidence. The retort to anything they cite was already written - by NICE! These are all NHS staff proposing ways of working in the NHS, this isn’t a “private clinic” seeing 50 people.

Thanks Trish. This really is dire.

I think part of human rights is not to be tortured, maybe we can top trump their “right to rehab” with that, seeing as they are championing something proven to cause harm…

We could question their theory from the other angle? What is the “ceiling” of improvement and how do you know when you are there? C’mon Petey G, let us know! You’re the expert, right? You’ve been practice this for goodness knows how many years. What is the average maximum? Recovered to as...

Can we report the clinicians to their professional bodies? BACME need taking out. I hope AfME are on our side, even quietly.

Highly unlikely, with ill health retirement at full rate you need an illness that is guaranteed it won’t improve. And it’s guaranteed there is no treatment. With LC both are unknown, you would be lucky to get ill health retired at half rate with a review after a year or three. You will most...