10 easy ways to reduce your fatigue fast! Times article about Katrina Antram

For me, it has always been about "extreme exhaustion". That has always been my main symptom since coming down with ME back in 1991. I'm not tired. I'm not sleepy. I don't have any desire to go back to bed and spend the day laying down. I am absolutely exhausted from the time I get up in the morning until I go to bed at night.

 

This is why ME needs to be called ME, SEID, or anything but CFS. No friends or family have ever dismissed me after saying I have myalgic enceophalomyelitis. When we choose the term ME, we're deliberately saying it's a serious disease, and it's not fatigue.

 

Doctors hate her! Local mother shares this one vegetable that cures ME

 

Although I think it's a key part of why ME is such a neglected disease and we are so stigmatized, I always forget who renamed it to CFS. Do you remember? Does anybody remember?

 

The name was invented by a panel of American doctors after the outbreak of a mysterious illness in Lake Tahoe in the mid-1980s. The illness may or may not have been ME, it had similar symptoms. They decided to call the outbreak 'Chronic Fatigue Syndrome'. See https://pubmed.ncbi.nlm.nih.gov/2829679/ for the paper about the name choice, and https://me-pedia.org/wiki/Chronic_fatigue_syndrome for more info. One of the doctors in that panel was Dr Anthony Komaroff, who later said he regretted the choice of name: "I think that was a big mistake because the name, in my opinion, and the opinion of a lot of people, it both trivializes and stigmatizes the illness. It makes it seem unimportant, maybe not even real".

Here in the UK, the name ME got changed to CFS in the mid-1990s by Simon Wessely and his colleagues, to fit their own agenda:

https://www.youtube.com/watch?v=qrVO1s8u3K0

So as a result of all this, a serious disease became trivialised as mere 'fatigue/tiredness' and made into a laughing stock.

Regarding my last post, I was posting in a hurry last night and meant to add this to the above: We've also seen a recent paper by Chalder discussed here that endorsed Mindfulness for 'CFS' or chronic fatigue or whatever, and we've also seen the BPS crowd's wholehearted endorsement of Prof Garner's declaration of having 'stared down the barrel of ME/CFS and disarmed it' with the power of his positive thoughts and military exercises. And now he fullthroatedly promotes LP. So yes, they are not above endorsing ANY sort of woo as long as it reinforces the idea that psychology and GET are valid treatments for ME, however contrary to the updated NICE Guidelines which they are still super-butthurt about.

Post copied to this thread
https://www.s4me.info/threads/diagn...e-labels-me-and-cfs.12101/page-15#post-470177

 

The Institute for Optimum Nutrition was founded by Patrick Holford:

https://en.wikipedia.org/wiki/Patrick_Holford

 

Ramsay's disease has a nice ring to it. The reactions when I say I've got ME are generally shock as it sound serious. Honestly never used the term CFS as I wasn't diagnosed with that but it does seem very easy to dismiss by health professionals and is distinctly inaccurate in describing what this disease is about.

 

By counter indicated do you mean exercise is harmful to ME/CFS patients? If so where does it say that?

To be fair, Charles Shepherd said that even back in the 1970s he was taught that ME was hysterical nonsense and the media in the 1980s were calling it yuppie flu. Not saying that the name change to CFS was good, I hate the name and think it made matters worse.

 

I would love for it to be called Ramsay's Disease. It would be a nice tribute to good Dr Ramsay, and not make any declarations about what the symptoms are, so then those who object to it being trivialised as 'fatigue' as in CFS, or being stated as inflammation of the brain/spinal cord/muscles as in ME when there apparently is no definitive proof that that's what it is, would have nothing to object to. But AFAIK, diseases are no longer allowed to be called by someone's name? Unfortunately here in the UK, you can't escape derision by calling it ME rather than CFS, both names are equally smeared here.

The McEvedy and Beard paper of 1970 declared the Royal Free outbreak of ME to be 'hysteria' because the sufferers were mostly female, without ever examining a patient or even looking at their notes, which tarnished the disease and hence the 'ME is hysterical nonsense' teachings. Why that paper was just uncritically accepted, is unfathomable. Probably to fit an agenda at the time. I got ME in 1983 and although there was the 'yuppie flu' derision in the press a couple of years after I got it, it was still treated more seriously by the medical world than it was a few years later after the psychs barged in and took over.

 

Though a fair number of clinicians still advocate exercise, it is surely no longer acceptable in the UK, with the new NICE ME/CFS guidelines, to do so without reference to PEM, and further the author specifically advocates GET which NICE clearly rejects for people with ME/CFS. Certainly any UK professional advocating exercise without reference to possible adverse reactions is now in the area of professional misconduct.

(Not enough clinicians would agree with this, but because it may currently be a minority view does not make it any less correct.)

 

I'll believe that when I hear it. The GMC and other governing bodies have been terrible when it comes to complaints against medical professionals who disbelieve ME patients.

 

no, but unless you want to risk complaining about them, it means that the recommendations to exercise & the 'difficult/uncompliant' etc, type slurs being quietly added to your records when your argue/refuse/politely point out the new NICE GL. I say 'risk' because you'll likely be tarnished with even worse if you do complain.

 

A major newspaper is not an innocent victim. They can research, they could speak to people who have a disease, they could speak to people with actual expertise. They choose not to, and that’s a choice, not an accident.