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

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CRG said:
A clinician can't just switch a patient's diagnosis on whim - it would have to take place within some sort of process involving the patient and within which informed consent would be foundational. Changing diagnosis would implicitly involve a change in the treatment and care plan that the patient is entitled to. If those running CFS services were to change diagnoses on mass there would be a clear case of malpractice.

I don't doubt that individuals have suffered from surreptitious changes to their records but some kind of mass switching would demand all sorts of answers from those doing the switching.
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FND is an additional diagnosis ( at least it is here)
 
CRG said:
A clinician can't just switch a patient's diagnosis on whim
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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.
 
CRG said:
A clinician can't just switch a patient's diagnosis on whim
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~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.
 
CRG said:
A clinician can't just switch a patient's diagnosis on whim - it would have to take place within some sort of process involving the patient and within which informed consent would be foundational. Changing diagnosis would implicitly involve a change in the treatment and care plan that the patient is entitled to. If those running CFS services were to change diagnoses on mass there would be a clear case of malpractice.

I don't doubt that individuals have suffered from surreptitious changes to their records but some kind of mass switching would demand all sorts of answers from those doing the switching.
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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.
 
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Dx Revision Watch said:
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.
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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.
 
Peter Trewhitt said:
Dr Charles Shepherd said on the MEA Facebook page in a response to a comment on the announcement of tomorrow’s publication that they are getting ‘quite a lot of media interest already’.

I guess a Friday publication means there can several days of reporting, including the Sunday papers, before it drops out of the main news.
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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..
 
Fainbrog said:
So, the SMC

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..
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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.
 
Fainbrog said:
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
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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.
 
Peter Trewhitt said:
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.
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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.
 
Fainbrog said:
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.
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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.
 
TiredSam said:
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.
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If you watch the family court reform you can see it all happening
 
I think the UK media have tended to believe the BPS proponents version of events, egged on by the Science Media Centre's biased reporting, and backed up by the old 2007 guideline. It has been very difficult for the charities to counter that. Charles Shepherd in particular has done a lot of very good media interviews over the years, but he can only do them if the media invite him.

I'm hoping with this new guideline, the story will start to change. We've seen signs of this already with the combination of the draft guideline and the long covid effect.
 
AknaMontes said:
The biggest seems to be the ease with which it will be possible for people's diagnoses to simply be switched to FND, MUS, etc etc. in order that the abuse can continue without anyone raising an issue with the guidelines.
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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?
 
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