Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

Oh how I wish that was how it worked. Firmly pressing buttons is my occupation at the moment and I do wish the computer and others would take notice of my intent.

 

It is one of many things that I tried. I took a whack at it myself though, without any outside coercion and reading it from a book. The advice was that if you couldn't fall to sleep at the designated times you'd go do something. It were a horrible couple of weeks and wouldn't recommend it to anyone.

A couple years ago I visited a sleep clinic for some help as they did all sorts of stuff including a lot of research in earlier years. Was very disappointed when they said the only thing they could offer me was CBT and when they heard I had M.E. they offered it for that too. Declined, said it only made me worse when I tried it and then got the hell out of there and haven't tried anything like it since.

 

If that is the case that was a very clever move in hindsight, but could have backfired so badly for patients. Having been involved in this tossing and turning quagmire that patients have been put through, it was understandable that people were skeptical and in a way perhaps, that is why they or the chair behaved ?

We must remember the Academy of Royal Colleges are also union reps for those colleges members and what would be worth knowing is were they representing those like your self that had worked hard on the guidelines and wanted them published or those that have so much to lose if they are published?

They are also entrusted with patient safety and ethics, how can they do all four at one time. I do understand from what has bee written about the RT that there was a determined effort to protect the patient, but it should not be that difficult for any professional to stand up for patients who have been harmed over decades?

Another role is to educate and set the criteria for Doctors training that is then sanctioned by the GMC, who also have a patient safety role.

They have so much control and no real way of patients making sure they do the right thing? For instance if a member was taken to court over or GMC of harm, caused by CBT and GET how would the Academy or GMC, who have so many conflicts of interest it would surrender them mute on all their roles? A constant loop that never ends rolling down the road, like that Victorian hoop game.

So where could that young man who brought the JR against NICE have gone to get remedies for the treatment he suffered or watched his mother suffer? There is a lot to learn for NHS England, NICE, AoRC, GMC through the patient safety role with regards to ME and this whole process.

 

I had my sleep monitored once. Even hooked up to a machine measuring everything, and feeling that I had been tossing and turning all night, the dr said that according to my graphs I had had a better night's sleep than most of his other patients, and had nothing to worry about. I wasn't worried in the first place, I've always been a pretty good sleeper. In the first couple of years of ME I had unrefreshing sleep and woke up feeling worse than I went to bed, but I'm back to sleeping normally now without any interventions or advice, through just pacing and being lucky. Last thing I need is to be sent to someone who gives me advice on "sleep hygiene". What next, "breathing hygiene", "listening hygiene", "looking hygiene" - how to use your eyeballs correctly? These things tend to be automatic and take care of themselves, and if there are any issues a quick google is usually enough to be reminded of the bleedin' obvious. Sleep hygiene probably has its place and is appropriate and useful in some circumstances, but to just prescribe it for PWME because you can't think what else to do with them is rather annoying.

Did you remember to flutter your cape whilst pressing firmly? Otherwise it doesn't work.

 

It is shocking what they can change subtle changes have big impacts.

 

Will give that a go. I have a wicked witch cape somewhere will dig it out and get back to you

 

with all the funding she has she should be challenged on that ? If she cannot fully explain PEM she should be thrown out?

 

They should have a toolkit as they do with EDS hEDS this is one thing a RT event could be useful for as it has been used in the past as a training aid. If there was a toolkit it would be easier for YP to enable to fight the battles they face.

 

A reminder from the Development Process and Methods Manual [PMG20] of the launching and implementation stages following publication of a guideline:

 

Yeah I heard before that googling before sleep might work, but it didn't do anything for me.

 

Did bloodletting come up at this meeting in the end? @Jonathan Edwards

It sounds like it didn't as nobody tried to press the issue with GET? Something I have been thinking about while we wait.

 

Coïncidentally I saw a clip of the tv programme QI a couple of days ago where they talked about sleep and how it's still a mystery why we do it.
They said that one current theory is that it is for cleaning the brain. (I remember because I chuckled at the image of tiny spunges and buckets. Sleeping in could be Spring cleaning.)

Then yesterday I came across this image on Twitter with the caption "spinal fluid washing over the brain during sleep to remove waste"

https://twitter.com/user/status/1452159387947126785



That this supposed mechanism would be prolonged in patients with ME or other illnesses for a reason would not sound far-fetched to me.

I have the opposite problem since I have Lyme, I wish I could sleep more.
I also had a sleep test done once: it showed major disruption with continuous waking throughout the night, which made the neurologist exclaim: "Well of course you are tired!" before he sent me off to a psychologist. (I wasn't tired, it was like someone had dropped a bucket of water on the control panel of my body, I had severe neurological complaints, PEM and spontaneously popping blood vessels. )


BPS-ers messing about with sleep is like everything else they do: claiming to have the answer and be knowledgeable about a physical function/expression that is partly known (which they'll ignore) but still being figured out by actual science, in a laughably simplistic way that follows prejudice, not actual expertise or knowledge. And then they give their "treatments" which boil down to advising/prescribing from their ignorance to the people who actually have to live with it and the consequences of what they are advised to do.

It's so on brand.

 

Hence "sleep hygiene".

Perhaps.

 

LOL!
What the BPS crew of course will mean is brainwashing.....

 

My mother has just asked if I am going to try ‘barbaric oxygen’. Are we still expecting NICE to publish the guideline or have we given up again? Just wondering. And how can we respond to the impending tsunami of clinics changing people diagnoses in order to give them GET? Is there an appropriate complaints process?

 

It's now gone. [phew]

 

Nobody even dared to raise the 'we know it works from clinical experience' hare.
Paul Chrisp and Peter Barry had made it clear that NICE works with proper evidence.
I think that shut them up.

 

I am struggling to ration my checks of the NICE website to once every half hour as the day wears on.

 

I was thinking just now that I might have to start checking regularly and keeping a close eye on Twitter..

 

Still no response to the various FOI requests about the decision to pause. Now severely overdue. Really not on. I am tempted to threaten to take the matter further if no answers soon. I bet they are waiting for the guideline to be published.