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Interesting reading this as it makes it clear where EBM falls apart, and starts short in the firs place. Comparing to the link at the bottom on formulation of research quesions it also shows why it has led to iterative stuck in rut because it doesn't answer a hypothesis or move anything forward...

I’m so annoyed with my phone - I put the words in right and it changes then all to sometimes three non words. And it’s getting worse with time and trying to crrect things and not better (you’d expect it would ‘learn’ if you took the i effort to override its autocorrect) Even my blinking phone...

I don’t actually know what ‘neurologist’ covers on the basis of what they do and the niches they can avoid certain things with vs generalist bits they absolutely must cover. I sort of assume they begin with the looking at scans - even though anyone with proper osychology will tell you the...

really confused and disturbed by this - it seems to have a frame of the ‘right information saud correctly’ which then has been used to house some sinister damaging malign and utterly made-up twists. Classic switch and bait pretend they understand and ‘just hand your vulnerable to us’ based on us...

It is good. And I agree that the format, rubbishness of the document meaning so much has to try and be elucidated, and timescale have prevented those with ME from contributing. I wonder whether a suggestion to MEAction that they - perhaps using the petition facility in some way - can at least...

yep then setting themselves up an area where they are ‘above measurement or accountability’ vs their colleagues has basically made them unlicensed. And talk about competitive advantage vs getting all that cushy funding nicked from their colleagues picking up their slack on the real jobs when...

It’s this inversion of reality by switching the subject/object fur every single fact to make it look like they aren’t the old and dodgy psych isn’t the only thing allowed to be looked into for 40yr etc that makes me think they aren’t just deluded but are calculated. There is constructivism where...

Am I getting confused but I thought in academia people joined groups based on a belief in methodology and research strategies or robustness, not just the dib-dib-dob-dob I swear I believe it's a tendency to be a bit hysterically thinking wrong making them think they are ill and will only ever...

I found the following from Margaret Williams whilst searching for what this letter has termed as 'false allegations' but history has now taught me in this means I could actually be looking for anything: http://www.margaretwilliams.me/2012/arise-sir-simon.pdf I'm not sure that I'm any the wiser...

Interesting. Given some sort of three-line-whip I imagine was involved for those with the career aspirations most dependent, I'm struck at how short and geographically clustered/niche the list of 26 people is actually. A lot of Bristol, Oxford and King's with a few from niche depts of...

I can see the point - we need to keep track of them, who they are, what they have done are doing and have been involved with. Definitely regarding conflicts of interest And certainly if you imagine that a lot of the different organisations are actually mostly the same people then listing who...

You might want to look up Kelland properly, and her 'niche' type of writing and who she has written 'in support of' in similar ways. I highly doubt what she decided to do with that piece/the reason she was hired to do that piece was anything to do with any pwme or anything that actually happened...

Worse than a cult because it works on targeting the supporters of the vulnerable to convince them their loved ones are 'pests' who are dragging them 'into the pit' and that they are ill 'because they don't choose the life they love'. Or in various other variations disregarding who they are as...

I do feel for anyone who might be a representative. It must be so beyond disappointing to have put so much energy in, when we think abou proportionally how much that really meant vs 'spare' energy compared to others, and how they may well have sacrificed their health as well as essential tasks...

These stories need to be out there day and night and no one should be able to distribute the nonsense BPSM/LP/NLP/cfs-CBT or any other fake Smile type acronym to hide what’s pretty sinister underneath as a model and mode (and what I’m beginning to think just looks like a form of radicalism...

Good find. This is highly pertinent I think in flagging how unreasonable and ingenuine a response it is for them to try and conflate and distract the question to withdraw by talking about what is another and different matter (that suffers from similar protocol and procedure issues) instead of...

worrying isn’t it along with the FND specialist being what I assume is the assigned specialism for the ME type after they’ve checked no lung issues etc ?

Looking at the ME Associations response about COFFI and lightening process today reminded me that one big issue we face is being able to say MORE than just ‘not helpful’ on these things but noting that these and the many other dodgy courses ICBs might throw money at are actually harmful...

:hug::hug:

I’m divided on what to think of this without a better read through when I feel more on it. Because the word perfectionism immediately makes me think urgggh, but then I can’t work out if there is ‘more to this’ with the self-compassion perhaps starting to note that maybe it isn’t ‘perfectionism’...