NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

Good luck finding a physician that will prescribe B12 injections. If it' s not a defined treatment noone will stick their neck above the parapet and prescribe it. Incredibly hard to get, though other fatiguing illnesses have no problems.
Please also do not think it is harmless. Sublingual B12 caused temporary blindness in my aunt ( noone seens to quite know why)

 

Page two of the slide presentations issued to us on Friday;

What does the scope do?

• Ensures the guideline addresses the key areas of variation in delivery of care and quality

How on earth can this be achieved? There appears no formal mechanism for feedback to NICE about "variation", care or quality!!.
NHS England and NHS Public Health have not addressed this.

Government (D o H and SC) don't collect data on ME CFS Services-
Not all services subscribe to "BACME"-
One of the informed stakeholders involve in NICE before and with BACME (medic) gave out some statistics which are not common knowledge (only 9% of services have a lead ( consultant level?) physician) , most are therapy OT and Physio led; annual average "spend" on a MS patient £80, and ME patient averaged at £4 I think she said (will have to check).

I suggested "Counting the Cost" Report could help inform?
http://2020health.org/2020health/Publications/Publications-2017/OHC.html

Also the APPG Inquiry (aborted) on Barriers to Access of Social Care.

She was pressing for some "outcome measures".....to guide the debate and NICE- If she meant "Friends and Family Test, (F&FT) ", forget it!
We pressing for some robust Key Performance Indicators for our area but the KPIs suggested we were told were too demanding (ie too revealing).
But even our statistical analysis of the F& FT revealed a worrying decline and reduced satisfaction year on year.
More worrying was the failure to deliver contactual obligations and that was not just waiting times.....with absolutely no consequences for the offending service from the commissioning teams.
Care Quality Commission deliberately ignored complaints too and refused to look at inspection.

So, when this came up today, I thought back to Friday.........
http://healthinsightuk.org/2018/05/28/qof-fiasco-2-immoral-refusal-to-learn-from-mistakes/

QOF Fiasco 2: ’Immoral’ refusal to learn from mistakes
By Jerome Burne
Last week I wrote about the great QOF (Quality and Outcomes Framework) fiasco – the 30-billion-pound public health experiment involving the whole UK population without any kind of testing or pilot programs and without telling patients (in any formal sense) what was going on. Ten years after its launch it was clear that it had almost totally failed. Yet almost no one outside the profession knew about it.

Given its potential impact on our health, this seemed a major scandal that warranted rapid action and proper investigation. This week’s post is about the medical establishment’s remarkable ability to ignore the implications and refusal to do anything about it at all. This failure to even attempt to learn any lessons from it has been described by one professor of public health as a ‘frankly immoral way to conduct policy.’

The policy wasn’t specifically kept secret but the key part of the program – paying GPs for testing for certain health biomarkers and then for prescribing various drugs if they fell above or below them – came as shocking or surprising news to those who did accidently learn about it. That accounted for half the cost, the other half went to pay for the increase in drug prescriptions.

 

We suggested using actometers as an objective measure, but suggested they focus on more of them, over the subjective measures suggested.

BACME have undoubtedly been part of the problem, because until now, their membership criteria 1) require adherence to the so-called 'evidence-based' method (CBT/GET) and 2) require you to agree not to 'harass' researchers and clinicians (which means asking no questions, as we know FOIs and questions are considered vexatious).

BACME has now removed the membership requirements from their website (I think?), which may be in anticipation of the new guidelines. I think they'll struggle, because the old rules weren't about maintaining high quality borne out by evidence but were about maintaining the status quo.

It's very telling that the clinics don't have publicly available audit information or stats. I bet if we saw them, there would be high numbers of discharged patients and/or low success rates.

 

AfME's post on it

https://www.actionforme.org.uk/news/people-with-me-must-be-heard-says-nice-committee/

 

PoTS UK are also stakeholders apparently

Facebook post


ETA: The post I quote is part of the discussion on the post above.

 

My experience of GPs is that they seem to have tighter constraints on what they can prescribe than we expect. Even if this is not true, in my support group I know of some whose GP refuses to prescribe medication to help with pain because ME is "purely psychological".

Many folk with ME have no specialist centre, or have one that is purely "Yes, you've got ME, here's the therapy team." They become totally dependent on the attitude of their GP. The NICE guidelines cannot really change this, but the tone of their guidelines could influence the approach of some GPs. Well, that's my optimism talking.

 

Objective outcome measures and "fatigue scales"- In our group I suggested that BACME acolytes and our local service, used the "Chandler Fatigue Scale"- which is long, demanding and patient unfriendly, local patients think it is a waste of time and energy_ plus it is "licensed" and has to be paid for- or so the Norfolk & Suffolk (East Coast Community Health) clinic told us!!? NICE seemed surprised it has to be paid for!

Now ECCH might be telling porkies.... Does any one know it it has to be paid for and, if so, how much?

Is Recovery from Chronic Fatigue Syndrome Possible?
Published: March 27th, 2013
Category: Blog-Posts

"Chronic Fatigue Syndrome (ME/CFS) is a multifaceted and complex condition characterized by debilitating fatigue, impairments in concentration, and musculoskeletal pain.
About 5 years ago, the UK government issued funding for a large scale study investigating the efficacy and safety of various treatments for ME/CFS, known as the PACE trial
the release of these findings, several key criticisms came to light.........
First, the results of the PACE study used the Oxford selection criteria as opposed to the CDC criteria, meaning that some of the participants might not qualify as having ME/CFS according to internationally accepted CDC criteria. Second, the protocol was changed during the trial. Third, the Chandler Fatigue Scale, designed by one of the researchers, was used by participants to rate fatigue, but it has not yet been accepted as an objective and scientific method for measuring fatigue. All of these factors could confound the results."

Meriem Mokhtech, BS
UF Center for Musculoskeletal Pain Research
https://rheum.med.ufl.edu/2013/03/27/is-recovery-from-chronic-fatigue-syndrome-possible/

 

@dave30th perhaps worth highlighting this given the need for evidence based info has included LP .

 

I'm pleased with Clare's statement and AfME's points here. I think it means the message has got through, clearly.

I'm glad AfME raised aetiology too. I'm not sure if it should be included in the scope or not, but last time exercise studies were excluded because they were considered to be about aetiology (i.e., they were proposing a model of ME and why exercise would be dangerous based on that model). That meant GET studies got through but the papers contradicting them didn't.

 

There is a rider on top of a very badly trained and viscous horse. It's kicked and bitten before.

It remains to be seen how long the rider is in control and if the water is really there or just a small puddle.

Very few of the issues identified in the original meeting with NICE 17/1 went into the Draft Scope. It's over to written submissions to the Scope to be released 20/6 and then few of us will have anything to do with them again apart from what we can influence from writing.

The patients on the new GDG may be as toothless as the last lot and manipulated and managed.

Our two meetings are over. Now it's down to what else we can do which is practical and can influence the outcome like writing our submissions to the next part of the consultation and trying to find good people (of all the desired disciplines) to serve on the GDG.

 

But did AFME raise Aetiology at the meeting?

Did anyone hear them raise any of these points

 

There is a rider on top of a very badly trained and viscous horse. It's kicked and bitten before.

My sentiment completely and, if we ask who this Guideline is aimed at.....essentially Primary care , 'cos that is effectively all there is atm.
AND in our local regional experience, after a 13 year intensive spat, you can lead a CCG horse to water but will the buggers drink....?
Absolutely NOT! Not only that, they have slipped the reins, massed within Community Interest Groups CIC and therefore cannot be challenged by the public- refuse FOI, 'cos they are effectively "private companies" answering only to Companies' House and an Annual Report....

Cynical I am and today This is what I was sent. https://suffolkfed.org.uk/chair-blog/you-ask-what-is-our-aim/

You ask – what is our aim?
Posted: 20th April 2018

Those familiar with the recent Churchill films will be well aware of his bombastic speeches. His answer, of course, was: “Victory… at all costs”.

The Fed’s aims are more modest: “to support primary care…at reasonable cost”.

 

I don't understand how a discussion on ME vs CFS could be considered diverting given that we were there to discuss the Scope and the Scope started with a statement on umbrella term etc. It may be that they were discussing this in a general way and not tied into the Scope though...

I've seen the submission from the 25% group to NICE and they are very concerned about the use of ME and CFS. They representing the severely affected and it may be that some groups have different ideas on what in the Scope was important and not important.

 

What were her comments on the Scope please?

 

We don't to prove firm evidence but only that there are abnormalities and what they are. We can explain how mixing groups for research is maybe producing different answers as well.

Just an explanation of what we know at the moment.

 

Patient surveys on exercise and harms
Reports on outbreaks i.e. Giardia in Norway
The Dubbo report showing severity of initial illness

This feeds into Aetiology and what evidence on exercise as an example

(BTW AFME didn't bring these topics up at the meeting unless it was at another table?)

 

Yes of course we discussed the umbrella statement the importance of names etc. I know names and labels are important.
I just worry that spending a lot of time talking about how CFS isn't ME and vice versa isn't always helpful when there's so much to discuss. I mean specifically the idea that CFS and ME are two discrete illnesses.

I'd love to read their submission if it is publically available - do you know if I can?