Patient Access App article on CFS

Simbindi

Simbindi

Senior Member (Voting Rights)
I was browsing through the patient information links on the Patient Access app [https://account.patientaccess.com/] that my GP practice offers registered patients for ordering their repeat prescriptions, providing access to their basic medical records, vaccination history etc.

The following article is linked to under the box 'Chronic Fatigue Syndrome':

https://patient.info/news-and-features/the-latest-thinking-on-chronic-fatigue-syndrome-me

For decades, ME has been the subject of controversy among doctors, patients and the public. Conflicting views on the cause and treatment of this debilitating illness have been rife, with patients caught in the crossfire. Sally Turner, who spent years housebound with ME, uncovers the latest thinking on the illness.

Authored by Sally Turner · Reviewed by Dr Sarah Jarvis MBE
21-Dec-18 · 10 mins read

Myalgic encephalomyelitis (ME), also referred to as chronic fatigue syndrome (CFS), is thought to affect around 250,000 people in Britain and 17 million people worldwide - children as well as adults. One study, published last year, estimated that the annual economic cost of ME/CFS to the nation in relation to lost income, benefits and health costs was at least £3.3 billion, yet the illness has long been plagued by controversy.

ME involves a range of debilitating symptoms that characteristically fluctuate in severity, but is characterised by 'profound and disabling activity-induced fatigue which almost always affects both physical and mental functioning. The fatigue and other symptoms are not caused by ongoing excessive exertion and are not relieved by rest' (The ME Association).

Dr Charles Shepherd, medical adviser to the ME Association, explains: "We use ME, even though it doesn’t fully describe the symptoms, because many people have chronic fatigue for different reasons, whereas ME is a specific disease process."

etc.
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I think the full article can be accessed without logging into the Patient Info site.
 
I thought this information was worth posting because the new ME/CFS Nice guidelines are due to be published next month.

Therefore this may present a good opportunity for appropriate people to submit an updated article to this site. Maybe one that is more accurate in describing the full range of symptoms of ME and what symptom contingent pacing is, relevant links to GP training etc.

Not sure who to suggest to author such an article. Maybe something @PhysiosforME may like to consider and/or @EducateME

Edit: It would be really useful for patients to have a decent, up to date, article on this site, because they could then direct their GP to it (since the site itself is linked to the Patient Access App that GPs provide).
 
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Simbindi said:
I thought this information was worth posting because the new ME/CFS Nice guidelines are due to be published next month.

Therefore this may present a good opportunity for appropriate people to submit an updated article to this site. Maybe one that is more accurate in describing the full range of symptoms of ME and what symptom contingent pacing is, relevant links to GP training etc.

Not sure who to suggest to author such an article.
Click to expand...

It would be good to have some kind of standard info, like a press release, as I imagine there will be a lot of sites that will need to update their info.
 
Sly Saint said:
It would be good to have some kind of standard info, like a press release, as I imagine there will be a lot of sites that will need to update their info.
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That's true, but I was particularly thinking about an updated and accurate article aimed at GPs for this site, as patients can point them to it because this is a site that is specifically designed to help give patients background information to improve the patient-GP consultations and to help patients manage their conditions with self-care.
 
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