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

Andy

Andy

Retired committee member
Moved from the NICE guidelines thread



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

Patients may be offered:

Psychological support

Occupational therapy.

Relaxation therapy if required

Follow up with Consultant if required

Self-help management booklet

GET therapy
Click to expand...

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
 
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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."
 
Andy said:


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
Click to expand...

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).
 
Last edited by a moderator:
Andy said:


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
Click to expand...


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.:rolleyes:
 
janice said:
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.:rolleyes:
Click to expand...
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).
 
Simbindi said:
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).
Click to expand...

Is there generally any acknowledgement that autistic people might respond differently to CBT than others?
 
Simbindi said:
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.
Click to expand...
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.
 
Simbindi said:
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.
Click to expand...
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.
 
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