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

Confess I've set up a bookmark to its news page.

 

The very tired nerd in me is wondering if I can automate a regular check and to email me when it is updated. Then the really tired nerd says, actually, just look at it every now and again, don't make things more complex than they need to be

 

I just have this thread on notice, I reckon as soon as it's published the news will pop up.

 

Yep, set up this morning. Am also set up for "as it happens" Google News alerts.

 

I sent Follow-ups via WDTK on 10 October, 21 October and again, this morning. By tomorrow, my (very brief and simple) request for 3 dates will be 28 days overdue and I have still not been given any date by which it will be fulfilled.

It would not have taken more that a few minutes to obtain those three dates - so I don't understand why a response to my request has been deferred and is seemingly being treated the same as the complex and more time consuming requests which have asked for copies of all documents, calls, minutes, summaries of discussions etc between specified dates.

If they won't provide these dates (under whatever clause) I shall request an internal review.

 

You joke but my sleepy brain seems to recall a fad on breathing properly that folks were randomly recommending (good old unsolicited advice) to me about 5 years ago? I remember watching a YouTube video and apparently we all do breathing wrong... Wish i could remember more, i'm sure we could all do with a laugh today.

 

I have to say that it doesn't fill me with confidence that the guideline development information page still says "Expected publication date: TBC"

 

Frustrating too that the top search result for ME/CFS on NICE’s site remains the 2007 guidelines, which, though containing a caveat about GET being under review, gives no clear indication that the guidelines have been completely rewritten and that the ones shown are immanently to become obsolete.

 

I saw a well renowned cardiologist a few weeks back who mentioned that breathing is oft very shallow in pwME and PoTS, so one of the options for me might be referral to a breathing physio. Wasn’t sure what to make of it, but was exhausting just thinking about being taught how to breathe.

 

Not sure I have all that much a grasp on anything - but:

While NICE has a duty publish and promote its Guidelines it has no authority to make anyone take notice. It is a mistake to believe that the either the NHS or the Public Health services in the UK are constructed in any sort of joined up way, or that Government does not exploit this lack of cohesion for political purposes e.g deflecting responsibility, hiding funding deficiencies etc. NICE sits in its world and the various bits of the NHS sit in theirs with NHS Scotland being wholly divorced from NICE.

Of the bits of the NHS and NHS/Government interfaces (it's complicated, hence jargon word) that have a duty to apprise themselves of NICE Guidelines, those who Commission Services ( a mixed bag of CCGs etc) have to take note of services that are to be met in line with a given Guideline, however that is a different obligation to actually funding provision. Which is why we've had services that more or less comply with the 2007 CFS/ME Guideline, but provision is only sparsely available and often limited to only local or regional populations, the CCGs etc being obliged to commission services that comply with the Guideline, but not obliged to commission those services per se. If your head is hurting at this point - that is normal.

There are legal arguments to be made about CCG obligation to provide services but where funding is limited and competing demand is ubiquitous the Commissioners have wide discretion.

In addition to Commissioners, all clinicians have a duty to understand the Guidelines - this is relatively easy for specialists who only have to concern themselves with the Guideline or Guidelines that apply to their area of practice. For General Medicine things become more challenging - the sheer volume of material that a clinician has to stay up to date with is overwhelming, for hospital based GM this is to an extent made manageable by having multiple staff sharing knowledge and expertise. But profound difficulties arise for GPs, there is simply no way for every GP to stay on top of every development plus the avalanche of bureaucracy that the NHS generates for Primary Care.

GP per capita numbers in the UK have fallen in recent years and in 2018 the number was the same as it was in 2003 [1], although Scotland and NI have bucked this trend, the position in England is dire down to just 9 GPs per 20,000 patients [2]. Demand on GP time has increased largely because of the rapid rise in age related health care demand, while other structural changes such as the entry of large private sector operators into Primary Care (weird aspect of the NHS, GPs were always private contractors to the NHS but operated mainly as small partnerships) have impacted negatively how GPs interact with patients.

In the case of ME/CFS the patient to GP ratio is (using a patient population of 250k) just 6:1 (8 in England) i.e on overage each full time GP will have just 6 ME patients on their lists who they may not see from one year to the next. In comparison each GP would have a notional 1700 (2,200 England) people on their books. Many GPs may never see an ME/CFS patient and the reality is that most GPs are only going to look at the new Guideline when they have contact with a patient. And even then only if there's some requirement to do something different because of a change in the patient's health.

If there is no Commissioned service for the GP to refer the ME/CFS patient to, as is the case in most of the UK, then the Guideline is unlikely to have much impact for most patients. It's a moral victory - with practical gains (hopefully) further down the line.

[1] https://www.nuffieldtrust.org.uk/ne...cross-the-uk#the-headline-trend-in-gp-numbers
[2] https://www.bma.org.uk/advice-and-s...force/pressures/pressures-in-general-practice

 

I thought we may get a statement by now. Maybe something by the end of the day; oh well.

Re: breathing, I do find the idea that we might be ill because we're not breathing properly (and that you could somehow relearn how to breathe and be fine) fairly bizarre. The idea keeps popping up. I learned some exercises from my physio. It's nice for relaxation but that's about it. I have seen versions of this suggestion in the long covid context. Why does everything need an industry of BS? Breathing, sleeping. Ugh.

 

I wonder what odds Ladbrokes would give on it not being released until next week?

 

But what about the healing energy of a positive haircut? And house shoes. I mean, you can tell some people have just given up from the slippers they wear.

 

You would think they might have offered a sop to Cerburus. They could have had the minutes ready for publication even if there are technical delays for the guidelines.

 

Empires have been built on it throughout history, and nothing has changed ... nor will unfortunately.

 

I have observed that no multi billionaires seem to have ME, and have therefore concluded that ME is caused by having too little gold.

I propose a trial whereby pwME are given 1Kg of no strings non refundable gold, per day, until an improvement in their health or QoL occurs, at which point the theory is proved and the gold supply should obvious continue.

 

Wasn't Sir Frederick Barclay (of the Barclay twins) said to have had ME/CFS?

 

I have not observed this, personally

 

For all the good it's doing me

 

They must have been caught unaware by the decision at the meeting. On August 17 they managed to have a reasonably crafted statement out by early afternoon when facing an unprecedented crisis situation, the decision having allegedly been made earlier that day. Today they have had a week to prepare.

Of course, this might tell us something about when the decision to postpone was made.