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CFS/ME Service

Posted By Random

"CFS/ME Service"

About: Royal Cornwall Hospital (Treliske) / Chronic Fatigue/ME

(as a service user),

The website still describes a NICE 2007 Guideline approach now prohibited by NICE, following review of all the scientific evidence as harmful.

It describes this review process in a 2000 page document, it wasnt exactly superficial. It is giving a ‘list as dangerous’ reputation to the clinic which might actually be practicing safe medical care to patients with ME/CFS.

It even has the name of the condition wrong, perpetuating endless confusion in documentation between ‘Chronic Fatigue Syndrome (CFS)’ and ‘chronic fatigue’ which is something completely different, a symptom of other conditions, not the complex, biomedical, multisystem disease, Myalgic Encephalomyelitis (ME)

You really need to get your act together, you cannot rely on patients’ networks to spread up to date information by word of mouth? This is 2022 not the 1960s. 

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Responses

Response from Shelley Jackson, Matron for Respiratory and Neurology, Royal Cornwall Hospitals NHS Trust about a year and a half ago
We are preparing to make a change
Shelley Jackson
Matron for Respiratory and Neurology,
Royal Cornwall Hospitals NHS Trust

Submitted on 14/11/2022 at 16:59
Published on Care Opinion on 15/11/2022 at 09:35

picture of Shelley Jackson

Hi Random,

Thank you for alerting us to the fact that the information on the website is out of date. I've spoke to the web team who have kindly removed the page for us whilst we review it and update it with the most up to date information.

kind regards

Shelley

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Response from Shelley Jackson, Matron for Respiratory and Neurology, Royal Cornwall Hospitals NHS Trust 16 months ago
We are preparing to make a change
Shelley Jackson
Matron for Respiratory and Neurology,
Royal Cornwall Hospitals NHS Trust

Submitted on 19/12/2022 at 12:10
Published on Care Opinion at 12:48

picture of Shelley Jackson

To update where we are with this, the out of date information has been taken down. The team are working together to update the information and have the webpage updated in the New year.

Kind regards

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
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