Disease of the Month: Myalgic encephalomyelitis

[Kyla]

http://m.covermagazine.co.uk/cover/feature/2430206/disease-of-the-month-myalgic-encephalomyelitis-me?utm_medium=email&utm_term&utm_content=Disease of the Month: Myalgic encephalomyelitis (ME)&utm_campaign=CV.Weekly_RL.EU.A.U&utm_source=CV.DCM.Editors_Updates

Well this is definitely a mixed bag.
It was doing pretty well until it got to the treatment section.
No mention of rituximab, ampligen, antivirals, etc. But I think you can all guess what is suggested.

Also ironic that they have suggested pacing and rest earlier in the article...but then go on to suggest the opposite (CBT and GET). So I get the impression this article is just ill-informed as opposed to malicious or motivated by a BPS agenda.

Excerpt:

Disease of the Month: Myalgic encephalomyelitis

Fergus Bescoby writes about the symptoms and life cover implications for ME.


Myalgic encephalomyelitis or chronic fatigue syndrome, also known as ME, CFS or post-viral fatigue syndrome (PVFS), is a condition that causes extreme physical and mental tiredness that seriously interferes with a person's daily life.

During the 1990s, the term ‘chronic fatigue syndrome' (CFS) came into vogue. Since there was no specific diagnostic test for ME, and since post-exercise ‘fatigue' was one of its prominent symptoms, people with ME began to be diagnosed with ‘CFS'.

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In recent years, however, there has been a growing recognition that the diagnosis ‘CFS', based on a list of vague non-specific symptoms, is so broad that it encompasses a range of diverse patient groups.

It is a contentious illness because for years medical professionals refused to recognise it - often being dismissed as "yuppie flu", despite causing years of complex problems.

Currently it is estimated that some 250,000 people in Britain are affected by this illness.

ME is characterised by a range of neurological symptoms and signs, muscle pain with intense physical or mental exhaustion, relapses, and specific cognitive disabilities.

Early reports dating from 1934 described epidemics of the illness, such as the 1955 outbreak at the Royal Free Hospital in London. Nowadays however, it is more common for endemic (sporadic) cases to be identified. It is believed that certain historical figures such as Florence Nightingale suffered with the illness.

The World Health Organisation's International Classification of Disease lists ME as a disorder of the nervous system, under Post-Viral Fatigue Syndrome.

The syndrome leaves a chronic aftermath of debility in a large number of cases.

The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the sufferer persists in physical effort after its onset. It is felt that people who are given a period of enforced rest from the onset have the best prognosis...

 

[Sean]

File link is borked.

 

[Kyla]

File link is borked.

Hmmm...it works when I click on it.

 

[Kyla]

Oh...actually I thought you meant the hyperlink. I didn't attach any files, so that is probably why it doesn't work. Not sure why that is showing up.
Random ghost file has been deleted.

 

[Sean]

Yes, sorry. File link at bottom, not main link at top.

 

[Sean]

The article is okay. Certainly could have been a lot worse. It is an audience that is critical to get onside.

It is felt that people who are given a period of enforced rest from the onset have the best prognosis.

Apart using the word "felt", that is a welcome statement. My very limited anecdotal knowledge on this says that the best long term outcomes are for those who had the opportunity to do this.

 

[Forbin]

It is felt that people who are given a period of enforced rest from the onset have the best prognosis.

This was Dr. Melvin Ramsay's view at least as far back as 1986.

The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.

http://www.name-us.org/DefintionsPages/DefRamsay.htm

Probably like a lot of other people back then, I got the exact opposite advice from doctors who thought that I must be suffering from deconditioning (apparently a mysterious form of deconditioning that disables fit people overnight). They recommended vigorous exercise - which I did - and I got worse. I can't prove that it was the exercise that made me worse, but it sure didn't make me better.

 

[duncan]

"...ME, CFS...is a condition that causes extreme physical and mental tiredness that seriously interferes with a person's daily life."

"During the 1990's, the term Chronic Fatigue Syndrome came into vogue."

Extreme tiredness? Isn't there something annoyingly oxymoronic in that? "Seriously" ?

CFS came into vogue? Like a chic blouse? Courtesy of our marvelous friends at the CDC Fashion Boutique?

" a condition that causes...physical and mental tiredness that seriously interferes with a person's daily life..." My cousin Bobbie-Sue had a "condition". We don't like to talk about it, but (voice drops to an almost inaudible whisper) she had to go out of state to get it "taken care of".

And the "best prognosis" thing? If there is a prognosis scale, I don't think there should be a variable for "best". To keep it simple and honest, there should be five or ten degrees of Screwed.

Fifty Shades Of Grey, meet Ten Degrees Of Screwed.

 

[CFS_for_19_years]

Fifty Shades Of Grey, meet Ten Degrees Of Screwed.

You made me laugh.....also like Ten Degrees of SUCK IT