BBC: Myalgic Encephalomyelitis (ME) support

[John Mac]

Myalgic Encephalomyelitis (ME) support

Myalgic Encephalomyelitis (ME) support

www.bbc.co.uk

*What is Myalgic Encephalomyelitis?

• So Myalgic Encephalomyelitis or ME for short, is a chronic, fluctuating disease, causing symptoms such as sleep problems, problems with thinking and memory, pain and severe, persistent fatigue that does not improve with rest, and more.
• It can be exacerbated following minimal physical, cognitive, or emotional exertion, making everyday tasks or activities much harder and sometimes impossible, than those that don't have the condition, and can leave people with ME feeling really debilitated.
• Whilst there are the key signs that I've just mentioned, not everyone with ME experiences the same set of symptoms and the illness can vary, including how long symptoms last.
• One charity, The ME Association, estimates that around 404,000 in the UK have ME, and another charity Action for ME estimates that one in four people with the illness are so severely affected that they are house or bed-bound by the condition.
• The issue around language stems from the condition often being referred to as chronic fatigue syndrome, so you might see it written down or described in some cases as ME/CFS. However, many of those who live with the condition will tell you that chronic fatigue is just one of the symptoms of this illness, as I've just described, so it's really important to make that distinction if the term CFS is used. Being clear that this isn't just about being tired, it's so much more than that.

 

[Beth]

Deaths not mentioned AGAIN and “but symptoms can be supported and managed’ is technically not an out right lie, but still frustratingly delusional when revealed what these so called solutions are and what little for, i mean we all wouldn’t to be suffering as much if this was true

 

[MeSci]

I don't think much of the following on the page:

• You might have to visit the doctor a few times because excluding other conditions is an essential part of the process for a diagnosis to happen. The earlier the illness is recognised, the sooner symptom management and support can begin.
• If you are diagnosed, your GP may be able to refer you to an ME specialist, if there is one in your area, who can offer options for managing your symptoms.

As someone with a fatiguing illness, one cannot always visit a doctor more than once, if at all.

There are essentially no specialists that one can visit. Options are better delivered online.

 

[Sean]

Mixed bag. A step or two forward, but still a few to go.