“to pmm64
According to psychiatrists ME AND CFS is the same disease so why would I then be attacking a disease I myself have? If you have as I do a sore throat, pain in your neck, back, extreme exhaustion felt sick nauseous cannot concentrate and ill then HOW IS THAT just fatigue? I would not call a brain tumour just sore
Head disorder which anyone can have including people who listen to loud music .if you want to be diagnosed as just having tiredness then that is perfectly ok you are just tired chronically. According to Psychiatrists in recent newspaper articles children who stay up to late at night also have chronic fatigue syndrome and just need rest this is not illness. Go to the clinic for you or CBT or GET. This is no cure for ME if it was I would be delighted and give every psychiatrist a big hug .Finding ME on the internet and its definition explains the symptoms well cCFS for the same symptoms does not . I am not against those with CFS as some or most will have ME by another name. I didn't chose these names but if they don't work well such as just tired syndrome in describing the severe disease I am suffering from then I don't want to use them personaly . I am sorry for being annoyed”

“to benhills2 - "Chronic fatigue syndrome by itself is fatigue." - of course it isn't, and no definition of CFS would ever suggest this. You really should check your facts before posting incorrect information about something just because it suits your agenda. Many people with a diagnosis of CFS whose lives are in ruins may have friends, colleagues or family reading this thread. They wouldn't want their condition to be described as simply "fatigue". It would trivialise their suffering.
And the Frenchay Unit do much good work to treat people, even while they acknowledge that a medical cure hasn't been found yet. Again, imagine the stink if people were turned away because "There's no cure: Go away"!”

“by Thunderfield
Tuesday, December 27 2011, 3:29PM


- impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities
- multi-joint pain without swelling or redness
- post-exertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity) lasting more than 24 hours.
So if someone says they've been diagnosed with CFS you shouldn't dismiss them as 'not being as bad as someone with ME', they may just have had a different GP."


I totally disagree with you thunderfeild Chronic fatigue is Chronic fatigue the psychiatrists certainly don't want CFS to be anything more than just fatigue otherwise they would leave no room for interpretation and just call it ME .
The public and media also attaches little value to CFS often mistaking it for laziness or staying up to late again this suits the psychiatrist who want ME to be a fuzzy non disease . Picking one symptom and calling the disease that one symptom achieves this very well. The psychiatrists know what they are doing to create confusion. Some people will be diagnosed with CFS when in fact they have ME. Similarly CFS can be diagnosed in anyone who is just exhausted tired, worn out or just depressed. These people who might not be ill with serious neurological disease or ME are then lumped together in the same category as a seriously ill ME patients in bed waiting for years without hope.
You also claim clinics are good. I disagree with you again a lot of these clinics are run by psychiatrists promoting cognitive behavior therapy or graded exercise therapy as moderately effective working on the idea that ME is purely psychological illness beliefs or a little fatigue requiring reconditioning of the body or mind. The same people some from kings collage London have spoken out in the media claiming ME patients are vile nasty worse than animal rights activists.
As a result I choose not to go to their clinics for my non cure and I chose to ignore people trying to tell the world that I am bad for having ME. What little respect or trust I had for them has gone long ago . I do not expect to be bullied for years and years or ridiculed and have my family degraded through the media by people who then demand respect.”

“According to Jason et al 2011, myalgic encephalomyelitis (ME) was first described in literature of the 1930s, where an outbreak of Epidemic Neuromysthenia in Los Angeles County in the United States was called atypical poliomyelitis because of its resemblance to polio (Gilliam, 1938; Hyde, 2007).

Then, an anonymous editorial of a 1956 issue of the Lancet coined the term benign ME (Anonymous Editorial, 1956). It was called benign because the illness did not lead to death of thepatient. Later, Ramsay (1988) published a definition of this disease using the term Myalgic Encephalomyelitis (ME) and the term benign was dropped due to the seriousness of the disability created by the illness (Hyde, Goldstein, & Levine, 1992).

The term chronic fatigue syndrome and yet another definition was created in 1988 in the United States.

In the International Classification of Diseases - 10th edition, the World Health Organization classified ME as a neurological disorder (G93.3). CFS and post viral fatigue syndrome were indexed to G93.3 as well.

There are many different names and definitions in use creating what is most likely an umbrella term for disparate entities. Research shows that some of the definitions include people with affective disorders only thus confounding the research and making it scientifically dubious to extrapolate results under one definition to patients under another.

This explains why exercise is harmful to severely ill patients with post exertional malaise, but may be helpful to mildly affected patients or people with affective disorders only for example.”

“@ lilypuss - I found Frenchay's CFS/ME unit very helpful during the early stages of my illness. They say up front that they don't have a magic bullet but rather that their aim is to try and help make your life as comfortable as possible whilst you have the illness. I found the staff very pleasant and helpful even though they're in the uncomfortable position of not being able to provide any treatment that has universally accepted proven efficacy. It was just good to speak to someone else that understood the illness!

@ benhills2 - Chronic Fatigue Syndrome isn't just a little fatigue either. For example the CDC describe it as 'a devastating and complex disorder' including:

- impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities
- multi-joint pain without swelling or redness
- post-exertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity) lasting more than 24 hours.

See: http://tinyurl.com/2amhgka

So if someone says they've been diagnosed with CFS you shouldn't dismiss them as 'not being as bad as someone with ME', they may just have had a different GP.”

“I totally agree ME is not chronic fatigue syndrome. Calling ME chronic fatigue syndrome is a little like calling a broken leg a sore leg as it seriously underplays the other symptoms of ME . Fatigue gets better with rest and exercise, ME does not. There are also other symptoms here which are as bad or worse, poor concentration, memory problems, Nausea, headaches and feeling terribly ill. Feeling diabolically ill for years and not being able to concentrate makes it very hard to cope with this disease or function as a normal human being.
This is a real illness it is not just a little fatigue. Fatigue also occurs in other diseases not just ME. Chronic fatigue syndrome by itself is fatigue.”

“@ Thunderfield. What treatment do they offer at Frenchay's CFS/ME unit? I'm interested to know what you've been offered and whether it helped you at all.”

“@ lilypuss - Chronic Fatigue Syndrome does not necessarily mean that you just sleep a lot. You can have an official diagnosis of CFS with one of the main symptoms being insomnia. The line between CFS and ME is so blurred that even the professionals cannot agree where to stand.

It doesn't make sense to distinguish between the two with such conviction. We need to wait until the science catches up. Only then will we be able to step back and start to apply labels.

@ Ed Lewisohn - I've been treated at Frenchay's CFS/ME centre. They don't treat people based on the label they've had applied at diagnosis but on their clinical presentation. Some GPs label patients with CFS that other GPs would label ME and vice versa. Think of the stink that would have been kicked up if the centre started to turn away patients just because their 'diagnosis' is ME, not CFS!”

“@ lilypuss - Chronic Fatigue Syndrome does not necessarily mean that you just sleep a lot. You can have an official diagnosis of CFS with one of the main symptoms being insomnia. The line between CFS and ME is so blurred that even the professionals cannot agree where to stand.

It doesn't make sense to distinguish between the two with such conviction. We need to wait until the science catches up. Only then will we be able to step back and start to apply labels.

@ Ed Lewisohn - I've been treated at Frenchay's CFS/ME centre. They don't treat people based on the label they've had applied at diagnosis but on their clinical presentation. Some GPs label patients with CFS that other GPs would label ME and vice versa. Think of the stink that would have been kicked up if the centre started to turn away patients just because their 'diagnosis' is ME, not CFS!”

“I have ME - I've had it for 36 years. Until 5 years ago I also had CFS - I would sleep for 2 or 3 hours in the afternoon and a minimum of 10 hours at night.

5 years ago I had a major relapse. My symptoms change. I no longer have the CFS. I sleep for 8 hours at night and rarely sleep during the day. My main symptom always has been post-exertional "malaise" - which is a euphemism for feeling *****y c*** all day everyday for days, weeks or sometimes months.

Many years ago (like 35/36) I was seen by a psychiatrist. He was the first person to realise that my illness wasn't a "mental" one but a physical one.”