2021: Communications between NICE and the S4ME management committee about the paused NICE ME/CFS guideline

Thank you so much for all the time and effort in putting that together. An excellent letter which makes good points.

 

Its brilliant thank you, so much hard work, i am so grateful

 

Great letter .

An awful lot of work has gone into that..and all the rest if the stuff for NICE.

I am extremely grateful for all of the hard work that has gone on behind the scenes by the stakeholders and everyone else involved.

 

Excellent letter! Thanks to all involved and all hard work.

 

Thank you for drafting such a succinct letter.

Given the energy drain this must have involved on top of the impacts of the current situation it is no mean feat.

 

Thank you all for the hard work and effort put into composing the letter

 

That is a great letter! Thanks to everyone who contributed towards putting it together.

 

Great letter!

Thank you for all your time and effort.

 

From S4ME Management Committee

On Monday 30th August (a UK bank holiday), the S4ME committee sent by email the letter posted in the opening post of this thread.

On Thursday 2nd September S4ME received a brief email from NICE inviting us to send a representative to the roundtable meeting. The letter included a confidentiality agreement for us to sign in order to receive the latest version of the guideline with the corrections made following feedback from stakeholders on the embargoed version.

The email did not include answers to any of our other questions about the roundtable's agenda or purpose, or next steps for the guideline.

On Friday 3rd September the S4ME committee appointed a suitable person to represent us at the roundtable and informed NICE of their name. We also returned the signed confidentiality agreement.

We asked in our reply about how much information we are allowed to share with our members and have not yet received a reply. We do not therefore feel able to share with you the name of our nominee or the date of the meeting. In the meantime please don't speculate about names or dates.

We share members' concern about the process and lack of information. We hope once the roundtable has happened in mid September NICE will act swiftly to resolve the situation.
____________________

 

Thank you to the Management Committee and those in the NICE guidelines subgroup and those members involved in various roles with the NICE guidelines group and process.

It has become a nightmare situation, but I appreciate you are working to your best abilities within the infuriating constraints of NICE confidentiality combined with the very limited information currently being released by NICE. Personally I have every faith that you will act in our best interests and probably in a more measured and appropriate fashion that I would myself.

It must complicate the matter for you that S4ME is also for many of us our main forum for exploring the issues and expressing our worries, our frustrations and speaking personally potential paranoia, whilst you are very constrained as to how you can respond to the heightened tensions in the various threads.

 

This is a huge relief to me that that S4ME will have a voice, because I truly believe that is really important for all pwME.

 

Thank-you

 

Well i for one just breathed a huge sigh of relief. I dont care who it is, if it's someone connected to us/from S4 they will understand the issues properly, even if they arent listened to, at least we know someone will be there representing us.

whomever it is who is volunteering to go - profound thanks

and also to the committee for putting in all this work. Much respect to you all for holding the confidentiality all this time it cant have been easy!

This whole NICE debacle is all very scary & upsetting, i cant tell you how grateful i am to be here & part of S4, with people i respect & trust, when the committee speaks to them, i feel heard. It means a great deal. Thank you

 

So the devil's advocates are no doubt well-informed of everything happening and have privileged information about what this clown show is about, while we are kept completely in the dark about the details of a "roundtable" whose aims and principles are undefined and will basically be a shouty fest about mind-body this and that.

Basically the same old: everything about us made by secret people unseen who don't care one bit for us. This is just a great system they got going there, way to reaffirm that it's all about physicians for physicians by physicians no matter all that false pretense about "patient-centered".

And what of the original patient representatives? Are they still part of the process? What an insult this is to all the work they had to do.

 

Also our collective voice is one determined to articulate current reality, not the false optimism of rehabilitation for rehabilitation sake, even when the only evidence we have is that it does not work.

The majority of us will continue significantly disabled [corrected typo] for the foreseeable future, until we see meaningful progress in understanding of our condition, and for the minority that see significant improvement or even meaningful recovery we have no evidence of benefit from specific interventions as such progress seems to happen regardless of intervention strategy or even with no intervention.

 

In the context of the roundtable I actually get they're making it as opaque as possible. I'm hoping they're acting in good faith and posting on the assumption of that. If they would hold this roundtable and be very clear that it's only an exercise in telling the RC's to adhere to the guidelines without making a fuss or something along those lines then the roundtable serves no purpose. If that were the case they'd be much better served by releasing the guidelines today and face what may come from those RC's.

If the roundtable serves the purpose that I think and hope it does, then it would be to get the RC's at the table, nail their colours to the mast as it were. Have them present their case, give them their say and then lay out the arguments why they are wrong, why the evidence review is what it should be, that due process has been followed. Get everything and everyone on record. If they still have objections then they are shown to be the unreasonable ones. If they don't have any objections at the roundtable then it makes it pretty hard for them to backtrack again once the guidelines are published in full. It would just be a case of pointing to that roundtable and saying you had your say and you were fine with it.

You don't achieve this if you say up front that the guidelines are the guidelines and they can huff and puff all they want, they won't get their way. I've always seen this roundtable as giving the RC's enough rope to hang themselves and that wouldn't be achieved by that.

That is not to say that this whole process isn't nerve-wrecking and very frustrating, because it is. We're in limbo at the moment with regards to the guidelines and their implementation and it isn't a spot we should be in. It's ridiculous we're only just now are getting the due process that we should have had decades ago. And now that we have it, it's being deviated from because of people with vested interests fighting against patients best interests.

But I still hope and have a bit of faith that this whole opaqueness, the roundtable, everything is to ensure that the guidelines are being rolled out with as little fuss as possible or if there is a big fuss that we have something to point to to say to the world that those opposing are being unreasonable. We as patients already know them to be, this however is about how they are painted to the rest of the world.

 

What I am curious about is who from the RC's will be sent. Will it be the persons with the vested interests that are considered to be the experts or will it be senior members of the organizations that don't necessarily have a dog in this fight but have been told by said experts that NICE was being mean to them.

If it are the latter then hopefully they are swayed quite easily by the mountain of evidence that is collected to come to the new guidelines. We all know from experience that we can't trust it will definitely work out that way, but I'd have better hope if it were just some unassuming senior members that have had a couple of experts blaring in their ear about how unscientific the whole process was for months. Then come to the roundtable to see that due diligence has been done.

If it are the vested interests I expect them to fight the guidelines against reason regardless.

 

In their press statement Forward ME expressed their concern that the 'finalised' draft guideline allowed CBT to be offered to 'help manage symptoms', something for which their is no scientific evidence and is different than standard CBT. I hope the roundtable event can also be used by patient groups to express any concerns they have for the unevidenced 'management advice' that is still in the final version of the guideline, especially when this goes against symptom contingent pacing (that is, pacing that is both reactive and proactive).

With regards to CBT I think it could easily become (or remain) a 'treatment' that potentially harms patients and leads to patient blaming (boom and bust blaming) as opposed to a benign supportive tool. I feel this way because we still have IAPT's version of 'CBT for CFS/ME' out there and without that important statement that was in the draft version - not to offer CBT as a cure for ME/CFS - ME patients could easily find themselves directed down the MUS CBT route, especially as more and more 'CFS' clinics are expanding to general fatigue and pain clinics. NICE need to recognise there is a significant potential for this to happen if the final guidelines are not worded correctly.

If NICE has allowed professionals to raise additional objections to the final guideline then patient groups should be able to do the same, even if it is just to 'go on record' about their concerns.

It should also be noted at the roundtable event that the 2007 guidelines dealt with potential harms by stating that therapists should discuss the 'risks and benefits' of GET, yet we know that never happens in practice and many ME patients have suffered deterioration as a result of GET over the last 14 years. It is clearly not sufficient to add in this 'get out clause', the NICE commissioned patient surveys are evidence that this approach did not work in the interest of patient safety.