The Brain Charity - website content on ME/CFS

[Sly Saint]

Just came across this charity which is for people with neurological illnesses.
So that's good that they recognise ME as a neurological condition.
However, under the charities (AYME is still there) section in Online resources it cites the Cochrane Exercise review and below that Crawleys SMILE trial.

anyone fancy contacting them to get them to update their info?

https://www.thebraincharity.org.uk/how-we-can-help?catid=0&id=159

 

[Sly Saint]

The page linked to above has gone.

There is this page (not sure if it was there before), seems OK.
https://www.thebraincharity.org.uk/condition/chronic-fatigue-syndrome/

 

[Sly Saint]

Wirral MP highlights findings in The Brain Charity’s report on diagnosis of neurological conditions

Wirral West MP Margaret Greenwood has attended an event in parliament to mark the launch of a new report by The Brain Charity.

The ‘It’s all in your head’ report surveyed more than 800 people with neurological conditions to learn about their diagnosis experiences, from their first concerns to life after a diagnosis.

It was found that 48% of those surveyed left their first GP appointment not feeling well-informed about the next steps towards diagnosis or treatment, while 37% waited two years or more for a diagnosis of a neurological condition.

Furthermore, 49% said that a lack of support and information led to high feelings of fear for the future, and 35% had been diagnosed with depression or anxiety after being diagnosed with a neurological condition.

The Brain Charity has argued that the system as it stands is characterised by poor support for patients, long waits for diagnosis, and a preventable mental health crisis. It is now calling for an independent review into diagnosis of neurological conditions – a call which Margaret Greenwood MP is supporting.

There are more than 600 different recognised neurological conditions, including Attention Deficit Hyperactivity Disorder (ADHD), Multiple Sclerosis (MS), Myalgic Encephalomyelitis (ME), dementia, stroke and chronic fatigue syndrome, plus many other rare conditions.

https://www.birkenhead.news/wirral-...port-on-diagnosis-of-neurological-conditions/

eta:
report here
It’s all in your head report: The Brain Charity calls for independent review into diagnosis of neurological conditions

http://www.thebraincharity.org.uk/its-all-in-your-head

 

[rvallee]

Wirral MP highlights findings in The Brain Charity’s report on diagnosis of neurological conditions

https://www.birkenhead.news/wirral-...port-on-diagnosis-of-neurological-conditions/

eta:
report here
It’s all in your head report: The Brain Charity calls for independent review into diagnosis of neurological conditions

http://www.thebraincharity.org.uk/its-all-in-your-head

ME being classified as a neurological condition will be news to 99% of neurologists.

The largest proportion (25%) indicated having myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).

Oof. Skimming through, overall this is a very bad look for neurology. Their general lack of understanding makes their obsession with psychosomatics, on the basis that if they don't know it it must be fake, looks especially bad.

 

[Ash]

ME being classified as a neurological condition will be news to 99% of neurologists.

Oof. Skimming through, overall this is a very bad look for neurology. Their general lack of understanding makes their obsession with psychosomatics, on the basis that if they don't know it it must be fake, looks especially bad.

Yeah, I remember seeing this consultation of patients that they ran. I thought they asked good questions, I also thought it was to their credit that they included people with ME in this.