UK ME/CFS and Long Covid clinics not offering guideline compliant care accessible to all

Moved from the NICE guidelines thread

https://twitter.com/user/status/1461780785367863296


Following that Twitter thread eventually gives this link,

Long COVID clinics (Mid and South Essex Health

https://coronavirus.msehealthandcarepartnership.co.uk/localservicesandpathways/long-covid-clinics/


Which allows you to download the "Chronic Fatigue" pathway from this link, https://coronavirus.msehealthandcarepartnership.co.uk/content/uploads/2021/02/Essex-CFS.docx


Which for "possible CFS" says

and does indeed say

Quote:

We will not accept patients with unstable personality disorders
We will not accept patients who are currently having therapy within mental health services for long term mental health issues
We will not accept patients with active eating disorders
We will not accept patients with a diagnosis of Autism
We will not accept patients with a severe diagnosis of CFS who are house bound
We will not undertake domiciliary visits; all patients must be able to attend an outpatient clinic.

We accept patients for assessment with possible mild to moderate CFS patients

 

Investigating the site linked above, I can't find another way to find that "Chronic Fatigue" pathway document. I did find however the "Chronic Fatigue Syndrome MSEMOC Position statement", https://coronavirus.msehealthandcar...atigue-Syndrome-MSEMOC-Position-statement.pdf

Dated October 2021, it explains how "Mid and South Essex CCGs do not support the prescribing of dietary supplements, complementary therapies or other medications for the treatment of chronic fatigue syndrome nor myalgic encephalomyelitis / encephalopathy (CFS/ME) in accordance with NICE CG53."

 

So thankful for my autism diagnosis - it would make me exempt from their 'care'

On the serious side, I wonder if this is because administering CBT to an autistic problems can cause the therapist difficulties. I did manage to bring one therapist to near tears with my questioning of her statements... (Not because of my behaviour, just my verbal reasoning).

 

I am totally shocked and saddened by this type of stuff. For both Long Covid and pwME.
Equally I can't work out why I am that shocked.

 

I think it shows that mental health treatments (GET and CBT) are being delivered by healthcare professionals who aren't experienced in dealing with actual mental health difficulties, at least not anything that is beyond 'mild' suffering. They don't know how to manage or interact with anyone with a severe illness (either mental ill health, autism or physical ME/CFS).

 

Is there generally any acknowledgement that autistic people might respond differently to CBT than others?

 

I'm not sure of the formal evidence, but it does seem to be recognised by the NHS that CBT needs to be adapted for autistic people. However, antidotally I know a number of autistic peers who have been left traumatised by it.

 

Thats interesting, hadn't heard that before. I can add an anecdote - I had CBT for anxiety (et al) and might possibly be autistic. I do feel sort of traumatised by a good chunk of it, felt gaslit and struggled to trust myself afterwards, and am more convinced now than ever of the bottom line beliefs they tried to change. It was also incredibly frustrating, illogical, and failing at it felt shameful at the time.

 

There has been a push to educate hospital staff about the problems autistic people have accessing medical care. One example given was a teenager being examined by 2 doctors who asked him if he heard voices. When he said he did they began the process of getting him admitted to a psychiatric ward. His mother loudly asked him what voices he heard and he pointed to the doctors.

People think they understand autism but the nonautistic take too much for granted as it is obvious to them so special training is required so the autistic have equal access to health care.

 

I had heard that it's the impact of applying a therapy for a neurotypical mindset to a neurodivergent one that is the crux.

Though not designed for autism DBT seems to fare better.