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

EzzieD said:
How, oh HOW, will it ever get through to the press, and everyone else who is not conversant with the disease, that it is not 'extreme exhaustion'? What about all the rest of the, much more crippling, symptoms?
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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.
 
JemPD said:
Its never going to end is it....

Person with poor diet, poor sleep, not enough exercise & plenty of stress, leading to her feeling TATT, gets misdiagnosed with CFS, then thinks that everyone with CFS feels just like she did.
Improves her diet, sleep & exercise regime, and hey presto, shocker, she feels better & thinks she has the cure for CFS.

So every doctor, dentist, nurse (including those on hospital wards deciding whether the person with severe ME/CFS who says they need a private room because of sensory sensitivities, actually get one), every health professional, benefits assessor, social services care assessor, that reads it, it ye again told that what is wrong with us is very minimal & therefore we should not be entitled to PIP or a slice of limited care funding. Since most of them feel knackered every day anyway why should they help PwME/CFS when they(PwME) could just eat some more pineapple.
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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.
 
EzzieD said:
How, oh HOW, will it ever get through to the press, and everyone else who is not conversant with the disease, that it is not 'extreme exhaustion'? What about all the rest of the, much more crippling, symptoms? I absolutely detest the day that ME got renamed CFS, and the people who invented the name. And yes, it is such a shame that the Times has gone over the years from a respectable paper to the level of the Sun et al.
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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?
 
glennthefrog said:
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?
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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:



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

EzzieD said:
Well, the BPS crowd endorse the Lightning Process, eg Esther Crawley's SMILE trials and the official stamp of approval of LP by a few other countries' national health services we've seen discussed on this forum. And they claim that FND is a thing. So I wouldn't put anything past them.
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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
 
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RedFox said:
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.
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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.
 
Peter Trewhitt said:
GET is at best a controversial intervention that though potentially useful for burnout is counter indicated for ME/CFS.
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By counter indicated do you mean exercise is harmful to ME/CFS patients? If so where does it say that?
EzzieD said:
So as a result of all this, a serious disease became trivialised as mere 'fatigue/tiredness' and made into a laughing stock.
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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.
 
Solstice said:
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.
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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.

DigitalDrifter said:
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.
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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.
 
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DigitalDrifter said:
By counter indicated do you mean exercise is harmful to ME/CFS patients? If so where does it say that?
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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.)
 
Peter Trewhitt said:
(Not enough clinicians would agree with this, but because it may currently be a minority view does not make it any less correct.)
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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.
 
Shadrach Loom said:
https://www.thetimes.co.uk/article/...atigue-fast-tips-health-advice-2023-6c886m3hb

Unpaywalled: https://archive.ph/mklII



GET gets a plug, too.

As an occasional reader, I’ve been deeply irked by the Times’s vertiginous transformation into a Daily Mail lookalike under Tony Gallagher’s abominable stewardship, and now health coverage is going the way of its political and social commentary.

But all papers, I guess, are vulnerable to PR from proselytisers who were misdiagnosed and then decided - as they all do, apparently - to write a sodding book.
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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.
 
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