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

It could still leave all new patients vulnerable.

 

FND is an additional diagnosis ( at least it is here)

 

Some clinicians can and do. Esther Crawley will change a child's diagnosis from CFS to Pervasive refusal syndrome as soon as the child doesn't do what they are told. Parents can go from no diagnosis to whatever the new name is for Munchhausen's by proxy, even if they weren't the ones coming in to be diagnosed and treated.

When patients are vulnerable, certain types of clinicians do pretty much what they want.

 

Charles Shepherd confirmed this

 

~I tend to agree with @CRG here. Yes, patients get additional diagnoses and shifts in diagnosis but in the general context of ME it would be hard to shift to FND and not that easy to shift to MUS as a primary diagnosis. It wouldn't be that easy to start afresh with them either.

There may be problems but at least there is now some hope that the legitimacy of pan-CBT will be questioned.

 

Some patients in the Devon area have been reported as having had existing ME, CFS diagnoses changed to MH diagnoses by GPs who have been been exposed to IAPT presentations.

And yes, an existing diagnosis of any disease does not prevent the assigning of an "overlay" diagnosis from one of the ICD-10 F45.x Somatoform disorders or from the ICD-10 Dissociative disorders categories. We now have the DSM-5 Somatic symptom disorder term in SNOMED CT which can potentially be added as a bolt-on to any ICD-10 diagnosis code*.

Edited to add:

*Somatic symptom disorder cross maps to F45.9 Somatoform disorder, unspecified in the SNOMED CT UK Edition to ICD-10 Classification Map.

 

Fabricated or induced illness (FII):

https://www.nhs.uk/mental-health/conditions/fabricated-or-induced-illness/signs/

 

How can patients most effectively prevent that from happening?

 

To me it seems the only way to avoid this is to avoid seeing doctors that have the inclination to respond to complex and poorly understood illness with labels like somatoform disorder. You can't change their beliefs or behaviour, that's something they need to change on their own.

 

Be interesting to see how effective heir media strategy is, particularly F-ME who appear to have engaged a media co based on recent meeting minutes. Hopefully it’s suitably powerful in getting to the major outlets.

Presumably, if the GL is released at 00:00 like the draft was, they will should able to get coverage in the Friday papers at least. Sadly, it’ll all be forgotten by Saturday, let alone Sunday, unless the media teams of the charities had F-ME are doing their stuff (based on other coverage some operate 9-5 M/F).

Hoping SMC folks won’t be wheeled out on R4 Today like they were when Sonia Chowdhury was on their after the pause..

 

And to add, I think this will be a major test of the charities (who, I feel have a lot to do to redeem themselves with many patients over recent times - and not just over the GL) and F-ME, to maintain coverage and get lasting traction.

I’d not be wagering much on the lasting coverage.

 

I think Friday is a good day to release from a reporting view point, unless there are bigger news stories about. The Sunday papers are less constrained by whatever is momentarily on the top of the current 24 hour hour news churn, but feel part of their role is to take a more in-depth look at some of the previous week’s news.

 

Absolutely, but, I fear, based on past experience, the charities settle for ‘some’ coverage, rather than in depth - I’ll be happy to be proven wrong on this, obviously.

 

Yes and not just over recent times, over decades I think the charities have really failed us.

 

Am still new to the ME world, only ill for 2 years next week, so have a fairly short memory of their failings, but unless something significant changes, this will become a long memory of their failings.

 

You have experience of knowing that the charities settle for 'some' coverage? What experience is that?

The charities I have interactions with would all like more and in-depth coverage, but it comes down to needing first journalist interest in writing something and then editor interest in publishing it - without those you don't any coverage, and those things aren't easy to cultivate for something like ME when so many in society have a negative view of us.

 

We stakeholders have a confidential copy of the Press release

 

If you watch the family court reform you can see it all happening

 

Any guideline would be open to abuse by people willing to abuse it and misinterpret it or apply it in bad faith. I haven't seen anything in the versions of this guideline that would specifically make these things more likely. is there something specific you're thinking of that's in the guideline versions?