Article: "I'd love to be able to say 'I have M E' and have people nod in sympathy"

[Ysabelle-S]

Article by ME sufferer Anne Brennan in the Irish Independent news site:

Myalgic encephalomyelitis sufferer Anne Brennan writes about her long, painful, frustrating battle with the disease that has stolen her once full and vibrant life

http://www.independent.ie/life/heal...and-have-people-nod-in-sympathy-35684337.html

 

[RogerBlack]

I am unsure, but I think this is the best mainstream media explanation I've read.

https://twitter.com/i/web/status/861914564975308800

 

[Gemini]

Article by ME sufferer Anne Brennan in the Irish Independent news site:

Thanks for posting @Ysabelle-S!

Outstanding article, beautifully written!

 

[me/cfs 27931]

'Chronic fatigue syndrome', ME's more fashionable label, says to people, "I am very tired". In a culture where success and fulfilment are synonymous with hard work, what they hear is, "I am lazy".

The sooner the ridiculously inaccurate name "Chronic Fatigue Syndrome" is retired, the better. I'm quite fed up with it too.

 

[hellytheelephant]

This is also my story...and I expect the story of most of us on here. Very well expressed article. may 'Chronic Fatigue' be deleted as a term!

 

[Diwi9]

Great article, thank you for sharing!

 

[me/cfs 27931]

One section did bother me in an otherwise very good article. I still see the narrative we should be doing graded exercise. And bedbound patients should be out of bed? Should patients like Whitney Dafoe not be staying in bed?

Cycling and swimming are certainly not appropriate or safe activities during my current relapse, and I suspect many others have similar concerns.

Depending on the severity of the condition, the patient can adopt a gentle exercise plan, gradually building up their physical activity.

This could start with walking just a few paces, but can be gradually built up.

Dr Vallings advises patients to avoid exercise which causes sweating, panting, heart racing or muscle pain.

"Swimming, walking, yoga, tai chi and cycling are all suitable activities which can be monitored and increased very slowly," she says.

For some patients, the symptoms of ME may be temporary, while, for others, they are long term.

"Managing symptoms is about getting the right balance between activity and rest," says Dr Shepherd. "You want to ensure patients don't try to force their way out of it by going down to the gym, and at the same time, you don't want people going to bed and staying there."

(emphasis mine)

 

[Diwi9]

@Webdog - Always seems to be the case...everyone is so concerned about us being deconditioned...just not too concerned about every other aspect of this disease that affects us.