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

Again. Deeply irresponsible and I don't buy the justification, which does not bode well. Most comments are saying the same things, there is no need to respond to every impertinent nitpick out there. Given the history and context, having a fully opaque process like this casts doubt on everything they do so I simply assume political corruption is happening. Trust is earned and NICE keeps making it very clear they deserve none.

 

Frankly, I think this appears very unprofessional to my eyes.

They know that a number of the stakeholders are ill and yet the stakeholders have had to comply with deadlines imposed by NICE if they wanted their submission to be accepted.

Stakeholders and volunteers who are ill.undertook their roles with the expectation it would last a given period of time. It is deeply unfair to keep prolonging that time on people who have to carefully manage their activities and how much they can commit to.

Once all the questions and comments were in they should have appreciated the size of the task at the time.

Every day makes a difference for someone.

I really hope this isn't because of any dodgy dealings going on behind the scenes.

Edit - thank you very much to the patient reps for all your input to date & I really hope this new delay doesn't place too great a burden on you.

 

Aah what?! I was really looking forward to the guidelines being released, especially so close to a hospital date. Finding it difficult to process now, as I had kept checking that date in my phone calendar. So many of us were looking forward to this.

I hope that this is because they ran out of time, they were hoping to get it done but now realised too close to the date, that they can’t. But at the same time I’m also really worried that BPS people are trying to do something behind the scenes and now something else will happen to mess it up. They’ve been doing a lot of odd things and making more publicity recently.

 

It is hard to trust this as we have never had any reason to trust NICE or their duplicitous advisers in the past .I hope this won't be an even bigger setback than just the delay .It is disappointing.

 

It's more than disappointing.

It's allowing people, and practises, that they have already admitted they think are 'wrong' to continue for longer.

Meanwhile, people will still be prescribed CBT/GET, GPs will still be able to behave as they have been, with the official blessing of NICE, benefits agencies will still be able to treat pwME 'badly' and unfairly.

 

Sad that my first thought is to question if something underhand is happening.

Of the feedback to NICE I have seen, that basically supporting the rejection of the current BPS approach and even arguing for more radical change than in the draft, particularly from patient groups, was so much fuller, better prepared and better argued than the little I have seen from the BPS proponents. Given the stakeholder representations will be published in full, hopefully any intelligent reader will see that too. However obviously the pro BPS stakeholders have not shared as much as the patient organisations.

As others have said, NICE should have been fully aware of the volume of comments by the start of January, so why wait so long to delay publication at the last minute? Are the full Committee still meeting to address the comments submitted and to agree any amendments to the draft, are there now new meetings being booked in after the cancelled April publication date? What input/control does the Committee have over any subsequent alterations to the draft or can NICE unilaterally rewrite the guidelines?

The potential knock on ramifications for the new guidelines if they continue in line with the published draft are potentially enormous and extend both beyond the UK and beyond the ME/CFS world. Potentially they impact on more than ME/CFS specialist services but also MUS, IAPT and the ever expanding CBT empire building and future Long Covid service provision. So it is likely there are lots of health politics cogs turning behind the scenes. How do we gain any insight into what is happening now?

 

What feedback from BPSers have you seen? And where?

 

This does not seem to augur well for us, but I may yet be surprised.

The draft guideline struck me very much as a closely fought compromise between two warring factions. Undoubtedly there will be many submissions, especially from those whose careers are bound up with the current "services", urging them to return to the status quo ante. I suspect that the patient and NHS CFS clinic submissions are poles apart & present irreconcilable alternatives; I wonder if the delay is less about reading through the sheer volume of comments than it is about the fact that every point, perhaps every word, will be closely contested.

The comment period was ludicrously short for ME patients to participate; I wasn't even able to read the whole guideline in the available time. While the healthy stakeholders have taken time out of their lives to participate in the process, the barriers to participation are disproportionately severe for patients. NICE refused, I understand, to extend this period and yet extend their own deadlines arbitrarily.

In the face of increasing evidence that GET causes harm, such delays are also terrible for patients' welfare. Perhaps an interim statement, as was done for the post-acute COVID guideline, would be appropriate?

To the patient reps, if you're reading this - we don't know each other, but this ME patient really appreciates what you're doing. Take care of yourselves.

 

Thank you.

 

Hmmm..I've never seen the word 'must' used that way, as in "Cochrane must remove it now"

When it's clear that they will see this as a victory, of sorts, and therefore will be even more determined not to.

Cochrane do not strike me, through their actions to date, to be 'reasonable', or 'good people' or even our friends. (we need a much bigger fall off the sofa laughing whatsit)

They are not likely to remove anything, so I suspect the word that you may have been looking for was 'won't'.

 

Thought once I wrote this that I would be asked, and am not sure how reliable my memory is.

I thought I had seen a couple of submitted comments, but on reconsideration this may be confabulation. On reflection I suspect what I have read was the various published letters, ‘editorials’ and social media comments that have been discussed here rather than the actual comments submitted to NICE. So I was probably being unfair not comparing like with like, even though the published BSP view points were badly argued and inadequately evidenced.

 

Yeah, I think the responses are under wraps until they are published with the guideline. I think we might have seen one or two, though I can't remember who from.

 

Sadly the advice on the NHS website will continue to be damaging and out of date. I gather it won’t be changed until the new guidelines are published.

 

But with both the ineffectiveness and potential harm of such treatment firmly in the public realm , informed consent and the Montgomery v South Lanarkshire legal.precedent may cut a bit more ice ?

 

They do not appear to have done so, which is a cause for 'great concern'.

At least for me.

Nothing changing is not a viable, or ethical, option.

IMO it is not just allowing medical, and state, 'abuse' of chronicall and often severely ill people, but actively supporting and endorsing it.

Being the 'justification' for why people think they should be allowed to 'get away with it'.

But it is what it is.