Daily Mail - beating CFS with exercise

[Woolie]

I think I remember reading that the chances of improvement are higher for people diagnosed in their teens than those diagnosed later?

I also don't like the implications of the article, and I don't like the way people use the MECFS label for things that are very different (e.g. depression). But I worry when we all question someone's diagnosis just because their symptoms are not as severe as ours, or they were lucky enough to improve/go into remission. None of this means they didn't have genuine MECFS. I think "genuine" MECFS varies in its severity, and also in its time course. Just the fact someone improved (especially someone young) doesn't make it "not MECFS". It just makes them luckier than us!

Of course, such people might turn out to have a different disease mechanism from those with the more severe progressive forms - there might be quite a few different pathways that lead to the syndrome - but until we fully understand the basis of the heterogeneity in MECFS, we can't say more.

 

[Wildcat]

.
http://www.dailymail.co.uk/tvshowbi...s-opens-struggle-CFS-s-beating-condition.html

."According to Johanna, who is mother to two children Joe, 18, and Jesse, 19, exercise is a big part of beating the fatigue."

.
~~~~~~~~~~~~~~~~~~

.

Publicity seeking celebrities and media stars do these interviews to get publicity for themselves and their careers.
They don't hesitate to use the disease for their own publicity, for their own advantage. In British newspapers they are virtually redefining the disease all by themselves. Redefining it as responding to exercise, or being indistinguishable from depression, or claiming they have been cured by snake oil (and exercise).


That self same newspaper (the Mail) has carried out an actual and relentless black propaganda hate campaign against
sick and disabled Brits. The paper is tireless in its disinformation campaign of redefining sick and disabled people as "scroungers" and "welfare cheats", repeatedly asserting that 75% of sickness benefit recipients are frauds and not really sick/disabled, and whipping up hatred, prejudice and hate crimes. The actual fraud rate in sickness benefits (ESA) is 0.5%, NOT 75%. The savage hounding/persecution of sick/disabled Brits, and unprecedented removal of sickness benefits by increasingly ruthless and merciless new benefits assessment practices, is a human rights scandal that has caused widespread human misery and countless deaths.


Publicity that says that people with ME need to exercise does serious and very real harm to vulnerable sick ME sufferers.

These celebrity articles do real hard damage to sick people with ME.
.

 

[Gingergrrl]

These celebrity articles do real hard damage to sick people with ME.

@Wildcat I totally agree and am at the point that I really cannot tolerate to read any more of these articles. If I tried to wake up at 5 AM and exercise, it would probably literally kill me. That woman Joanna (I have never heard of her prior to this article) does not have the same illness that I do.

 

[Revel]

@Wildcat, the quote that I used from Johanna was the same one that you saw on Twitter. She had been asked to confirm this was a 'genuine' article as, previously, New Idea magazine had made up a cover story, pretending to have interviewed her when they hadn't. I hope that makes my earlier post more clear.

In other interviews from years back she states that she had CFS between 1991 and 1993 (post viral fatigue, anyone?). She has also stated that she 'consciously decided not to exercise' for 10 years post initial diagnosis. So, exercise was NOT part of her 'road to recovery'. She returned to exercise at the age of 29.

I cannot relate to Johanna's journey back to health. Nor am I happy about the spin of this most recent article. How much input she had on the final draft, we'll never really know. Do I wish she'd kept her trap shut? Absolutely!

 

[Kenshin]

Well, Im one of the unlucky ones who forced myself to exercise in the early days and made my condition a hell of a lot worse.
We need to differentiate between CFS and M.E, there are many conditions and diseases that involve fatigue, some of those can be improved with exercise, the unique neurological disease M.E gets worse with exercise.
It is potentially fatal for an M.E patient to force exercise due to heart complications and lower circulating blood volume.

 

[ruben]

Say you took 100 people all who said they had a health problem, but on the other hand none of these people had a precise diagnosis. They all embarked on an exercise regime. Some might have their health get better, some wouldn't, some might even get worse. Simple I'd have thought, they had different diseases. Exercise on it's own will not help ME/CFS.

 

[alex3619]

Say you took 100 people all who said they had a health problem, but on the other hand none of these people had a precise diagnosis. They all embarked on an exercise regime. Some might have their health get better, some wouldn't, some might even get worse. Simple I'd have thought, they had different diseases. Exercise on it's own will not help ME/CFS.

Even with a precise diagnoses this can still lead to quackery. Only controlled trials may get around biases, and even then not reliably. If anecdotal evidence is used then any improvement of anyone for any reason might be cited to be from a favoured therapy. Even case series studies can fall foul of this.

 

[alex3619]

Well, Im one of the unlucky ones who forced myself to exercise in the early days and made my condition a hell of a lot worse.

One of the many many many, including me.

 

[ukxmrv]

Still no comments appearing on the webpage for this. I sent one yesterday.

 

[Valentijn]

Still no comments appearing on the webpage for this. I sent one yesterday.

I wonder if they'd approve a comment applauding whoever-it-is for supposedly curing herself with exercise

 

[Mya Symons]

I wish there was some way we could politely talk to her directly and ask her if she ever experienced PEM or OI. Anyone have any idea how to come up with her contact information? It would be helpful to know.

Someone who is really good at explaining the difference between CF and ME/CFIDS please comment on this (that is, if they accept our comments). It is so frustrating to have an article like this out there right after the Laura Hillenbrand interview!!

 

[Mij]

@Woolie my onset and for the followingt 8yrs of illness did not fit the ME model, I attended a few support groups and thought to myself, " man, I don't have what they have!". I was initially diagnosed with PVFS. It all changed when I improved to 90% and started exercising.

Granted, her doctor diagnosed her and she feels that's what she had, but It's seems odd to me that she still doesn't understand this illness. Did she not do her own research to educate herself over the years that exercising is contradicted and doesn't lead to recovery? Why don't these celebrities just accept that they never had ME and stop advertising that exercising and lifestyle changes lead to their recovery?

 

[Tired of being sick]

Doctors Blaming the patient's behavior every time they do not understand the illness, has been their trump card since the beginning of medicine.

This bogus claim is perfect example..

 

[Snow Leopard]

What would she have been diagnosed with in her teens in Australia though?

Both ME and CFS were floating around in the late 80s-91ish, but probably CFS. (1988 Holmes/CDC criteria)

 

[Valentijn]

Did she not do her own research to educate herself over the years that exercising is contradicted and doesn't lead to recovery?

It does seem implausible that someone would be diagnosed with an illness and never bother to so much as google it. It does suggest that at least some of these non-ME patients appearing in media articles may know they don't/didn't actually have ME/CFS, yet choose to cling to the diagnosis anyhow. After all, their supposed "recovery" from it through hard work shows how much strength of character they must have!

I don't think it's unreasonable to get a bit upset when someone makes herself the poster child for a disease which she doesn't have. If people are going to get into that situation, they can damned well educate themselves first.

 

[ukxmrv]

Both ME and CFS were floating around in the late 80s-91ish, but probably CFS. (1988 Holmes/CDC criteria)

That's what I was guessing but there was no mention of some of the Holmes criteria symptoms. Plus it would have been very early for someone to be dx'ed with CFS in Australia. Back then people were still be dx'ed with ME if they could get to the right doctor. Makes me wonder if it was someone like Llloyd or the psych Hickie (sp?)

 

[alex3619]

I was diagnosed, in Australia, with CFS using Holmes, in 1989! My doc was obviously up to date on disability issues. To confirm it she sent me to a second doc, who also found I I had a recent entervirus infection.

 

[Aurator]

It's a damaging article merely for suggesting that a patient can take active steps to "beat" ME/CFS. The fact that it makes exercise the weapon to beat it with is more damaging still.

As others have said, its bias reflects the political agenda of the newspaper in question. All we can do to counteract this sort of journalism is to keep asserting the anomalousness of cases like that of Johanna Griggs.

 

[Gijs]

Why don't this or other newspapers place an article about a ME/CFS patiënt who gets worse of exercise?

 

[chipmunk1]

i don't know anything about the story but she said she was diagnosed at age 12? Then had a successful career and recently she recovered?

I think it's more likely that she had a mild ongoing fatigue condition which can have hundreds of causes, e.g mild hypothyroidism, low iron, low oxygen etc..i don't see why some wouldn't respond well to exercise. I don't see how you could have a career if really ill.