NICE ME/CFS guideline - draft published for consultation - 10th November 2020

the Guideline itself

 

I found the document could have been formatted better, and the response form (a document based on tables in Word) is not ideal either.

 

So he has, funny that.....

And in the last 24 hours, instead he's posted two LP/CFS success stories, I guess he needs to bring in more clients before the news gets out to the wider world that the NICE draft has proscribed LP for ME.

I just checked on Wessely, Gerada and SHarpes twitter pages and still no mention of NICE draft.

 

I would imagine they are 'having a word' with various people, so that when they do pipe up the ground has already been prepared in a way they like.

So that they can be seen as agreeing, with someone else who doesn't like the draft, rather than instigating.

Standard BPS cover your own arse first operating procedure.
(SBPSCYOAFOP)

I'm sure with a few more words that could be made into a devastatingly apt acronym.

 

Yes, funny to see him tout them. He must have thought at first it would be a boon for the Lightning Process.

 

would love to know what they're thinking.

 

They may be working on their response forms right now.

 

Non-doctors generally can’t prescribe many if any medications or request tests. They are a way for a system to manage costs.

 

THE PACE TRIAL SUCCEEDED, BY A LOT!

 

Graded Exercise Therapy is out
https://www.centreforwelfarereform.org/news/graded-exercerapy-is-out/00515.html

 

I’ve just read @Jonathan Edwards ’s expert testimony (https://www.nice.org.uk/guidance/GID-NG10091/documents/supporting-documentation-3). It is absolutely brilliant, and a devastating critique of the CBT/GET models of ME/CFS.

Some highlights and comments:

This is an important point which Jo also made in his letter to Fiona Watt in 2018, although it appeared to fall on deaf ears.

I was particularly impressed with the section on ethics, which I hope will be read by those responsible for giving ethical approval to future trials:

This was new to me (but not surprising):

My hope is that the new Guideline will lead to wider recognition of the problems of research in psychological medicine and non-pharmaceutical interventions that go far beyond ME/CFS.

As well as the issues Jo raises, I also hope that alarm bells will be raised about how on earth these therapies became standard “treatments” long before there was even any unreliable evidence to support their use. Back in 1989 the redacted professor was suggesting the patients should be subjected to GET before they could be classified as disabled for the purposes of sickness benefits.


Under “Implications for Recommendations” (my bold):

This whole section is so important and exactly expresses my view.

I am lucky to have a kind GP who get on well with and who seems to understand how I am and who I am beneath my illness. A while back when I was really struggling to cope she arranged for me to have some psychological support at home (either in person or by phone) from a counsellor, who, as it happened, also specialised in CBT. She was not unkind, and my GP had specifically told her not to give me CBT, but it was clear to me that she would have liked to, and it very quickly became apparent to me that she wasn’t not going to be much help. I didn’t connect with her on an intellectual or personal level, she didn’t seem to have any understanding my illness beyond what I told her, and she didn’t seem to have anything very useful to say to me.

After I had stopped having the sessions, I explained to my GP that they had not been very helpful, and she appeared to understand. “To be honest,” I told her, “it would be much more useful to be able to spend the same time talking to you.”

“But I don’t have any training in counselling or therapy,” she replied.

“Exactly! That’s probably why I find it helpful.”

I’m not suggesting that people can or should not be trained in counselling – the main reason why I find it helpful talking to my GP is because we get on and I respect her knowledge and intelligence. And because she is a doctor, I feel that by giving her a better understanding of how I am, she may be able to do something useful with that knowledge one day. With the counsellor and some others I have seen before I might as well have been talking to Alexa.

My reason for sharing this anecdote is really just to reiterate what Jo is saying – if we accept that there are currently no effective treatments, then we need need to rely on basic human qualities of kindness, compassion and practical needs rather than bull***t therapies.

Returning to the draft Guideline, it makes me wonder if we should request that those who are responsible for developing and promoting the therapies which NICE is now warning against should no longer be involved with providing ME/CFS services. As Jo has explained, these therapies and the studies which have been used to justify them are ineffective, unethical and harmful. If NICE accepts this, should those responsible for such mistreatment not be explicitly excluded from providing services to people with ME/CFS in future? Are those who have misled patients about the effectiveness and safety of CBT and GET capable of giving the sort of care that is needed – in some cases to the same patients? I’m not suggesting that all the physios and OTs should be excluded but I don’t see how those at the top who are responsible for the services can be allowed to continue running services – particularly those who continue to insisted that CBT and GET are effective treatments for ME/CFS.

Finally, a suggestion to Jo. Now that you have put all this evidence together for NICE, might you consider doing a series of Zoom lectures – principally for medics and those with professional interests in the issues – which could be recorded and uploaded to YouTube? It might be a good way to publicise these serious and important issues beyond the ME/CFS bubbles.

And finally, finally. Sincere thanks for all the work you have done on this, Jo. Unlike most of us, you have no personal reasons for being involved in all this, and I am not at all confident we would have got this far without your input.

[edited typos for clarity]

 

Hahahaha i laughed so hard when I saw that tweet

 

Also a nice confirmation that none of these Twitter experts actually read what they are commenting on

 

Yes they have all gone silent in Norway as well, obviously they are having some sort of victimized preperation

 

I don’t know where to put this but:

Why can’t we just not have CBT anymore? Why is CBT and psychological therapy still playing such a huge role in our care (or even the main role, with a little bit of input with OT physio).

Why can’t we see a doctor - one main doctor who will oversee our care and be an ME/CFS specialist, who can advocate for us and help us talking about our exertion and come up with a plan. And see a specialist nurse in between, the way they do at the Lupus Clinic, to discuss our care plans. We just need specialists nurses, doctors to do home visits & discuss our illness and exertion and refer us on for other help if needed, then OTs & physios to help us at home and if we need any extra specific help that they can provide. Why can’t we have that. that is what I need.

 

To facilitate sharing of Jonathan Edwards' submission
https://twitter.com/user/status/1326563716037480448

 

There is the biobank now where blood samples can be efficiently obtained.

I'm not sure that the clinics in England have facilitated much biomedical research in the last 15 years. They have facilitated some biopsychosocial research.

 

Does the guideline recommend occasionally checking patients to see if a more clearly defined disease is emerging?

 

When I enquired about this in the past (for another guideline) via the British Psychological Society I was informed that lots of large organisations and government bodies are included automatically on the stakeholder list and that many have no intention to respond - unless they see something they don't realty like