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

In recent years, the SMC has also made sure to include a "dissenter" among the people it will release statements from, perhaps because it has realized to present just cronies and enablers of researchers to say nice things is no longer credible. Kate Kelland is no longer serving as a publicist for the SMC, having left her job at Reuters for a science communications job with some other organization.

 

I would agree that ME charities have not been offered much in the way of opportunities to really present facts in depth in the past up to the present.

However, IMO, charity spokespeople have lacked a certain savvy understanding about how their words will be used. I have read public statements where the ME spokesperson tried very hard to be fair not understanding how they were undermining the good they had just communicated by doing that.

There is NO need to acknowledge ANY point the BPS might have. They will not return the favour -- unless it's at some other time on twitter for example and it serves some specific purpose for them. In other words let them make their own points since they have been allowed to more ably do this now and in the past anyway.

 

I just recently got done by a psychiatrist who I'd known for over a year. He suddenly put mus on me because I wanted a second opinion for treatment of another health condition. Would have been better never to have discussed anything with him

 

Apart from seeing their GPs for non ME related complaints, only, and not discussing their ME symptoms (which is what my lad does), I don't know, AknaMontes.

ETA: Also, upon reaching the age when he could transition from paediatric secondary care for his ME to adult secondary care, he elected not to be referred to the local CFS service provision (which at the time was based on the "Wareham" model, ie a cursory assessment followed by group CBT sessions delivered by OTs).

 

This happens all the time in Psychiatry. It's happened to a lot of autistic people I know. Some have had their childhood autism diagnosis changed to Borderline Personality Disorder on reaching adult services, then faced a nightmare getting the ASD one back. It wasn't as if their autism wasn't bleedingly obvious to the most casual observer. There was no informed consent, the individuals were left traumatised and without the proper support they needed and their families left in shock.

 

Dreadful.

 

I think the autistic community is trying to get the full symptoms of autism recognised, particularly for those individuals who have previously 'masked' them and get the difference in the presentations of female autism formally recognised. They have also emphasised that autistic children and adults are more likely to face abuse, but the abuse isn't the cause of the autism. So for ME/CFS it is important that the full range of symptoms, including all the neurological ones, are recognised as being part of the condition and do not (for example) require an additional 'MUS' or 'FND' label being put on the patient if they are not found to be part of another specific condition (e.g. MS, Parkinsons, stroke etc.). Hopefully the new NICE ME/CFS guidelines will be helpful in this regard.

 

The females get the BPD diagnosis (because of their past trauma and autistic difficulties being internalised) and the males tend to get an antisocial personality disorder diagnosis (because of their outward behavioural problems). It appears that the Clinical Psychologists are much better than the average Psychiatrist at preforming competent autism assessments and diagnosis.

 

Yea I've no problem believing that Psychiatry diagnosis can be changed; lets face it, there really is no understanding of the underlying cause, so it's sticking labels on the presentation.

I vaguely recall a post where @Jonathan Edwards set out his experience as a young medical student - abandoning the whole charade pretty quickly --- unfortunately not much seems to have changed in the intervening period.

 

I question the claims in some quarters that ME, CFS patients are "thick file" "frequent attenders". Most of the UK ME folk I know keep as far as possible away from their primary care practitioners.

 

Me too. I have been sitting on a neurology referral for some extreme symptoms since 2016 and haven't seen my GP in person for about 3 years. These symptoms may or may not be part of my severe ME, but I am very concerned about having a FND label applied to my medical records. I am thinking very carefully about how to deal with this matter as it seems the main South West neurology departments all seem to have FND clinics now.

 

That looks like a very good strategy but is there any indication that it will be published in the second week of November?

I wouldn't be surprised if NICEs strategy is to publish it as soon as possible - let's face, it this has caused NICE enough hassle already!

On the plus side, NICE appears to have produced a sound guideline and weathered a bit of a storm in getting it adopted - seems to suggest that NICE has undone some of the harm caused by the 2007 guideline. Plus hopefully NICE will continue on the same track.

 

I guessed they'd get the guideline out quickly but no I hadn't heard that.

 

Beautiful fireworks! And let's not forget champagne at midnight and to wish us all Happy New Guidelines!

 

I had depression added to my file as the main problem without my knowledge by my so called ME specialist. He did tell me he thought i had depression, and when i said that i wasn't in the slightest depressed or even sad (I've always been blessed with a fairly cheery disposition despite circumstances), he said i must have depression without the depression (That's not a thing by the way!). I thought it was just an infuriating discussion, but it went on my file and i only found out a few years later when my nice gp brought it up.
So while it might be hard for them to delete the cfs (or ME if you've been lucky) as a diagnosis, other diagnoses do get added in (like depression, MUS, PRS, Anxiety, FND, Hypochondria...) and because we are not to be trusted we rarely get told about this at the time. I've heard so many stories of ME patients only finding out later when accessing their medical records like for benefits evidence, or when seeing a dr for something else and they bring it up.
I don't know how we stop this, or even if you have a right to say no, i don't accept that as a new diagnosis on my file. I suspect, such a request would put a red mark on your file as confirmation they were right and you do have MUS...

Anyway, i don't know how any NICE guideline could have prevented this occurring any more. But i hope it will encourage us, even if things are looking better for "us" that we won't leave others behind to fight on their own. I hope this is the beginning of the end for all this nonsense. I hope the new guideline is robust enough evidence to trigger calling all these other snake oil "therapies" and "diagnoses" into serious question.

 

Yes, there is a question, or set of them, in the pack of questionnaires sent out by our local ‘CFS’ clinic, which are clearly based on the assumption the patient has been seeing their doctor far too frequently, it doesnt even start by asking how many time that yeAr they have seen their GP! I never talked to my doctor about ME symptoms for decades because I knew there was only gaslighting.

 

I wouldnt consider seeing a neuro as from what Ive heard there are basically none that recognise ME as even existing. You could limit your consent to seeing someone who regards ME as physical not psychogenic, but you may not be able to find one.