Daily Mail - beating CFS with exercise

[Min]

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


Bet the Wesselyites are grinning and rubbing their hands with glee at this one. Johanna Griggs seeks publicity by claiming to have overcome CFS by exercise.

Comments can be left.

 

[Revel]

Thanks, @Min. I really must get my act together in 2015, join the gym and remember to take my multi-vitamins .

 

[Sidereal]

Damn, if only I had been getting up at 5 am to exercise I wouldn't have ended up in this situation.

 

[taniaaust1]

OMG not again. Im so bothered by hearing about this that Im not up to reading it right now, I'll do so some time thou as I sooo want to comment on this!

 

[Valentijn]

Sometimes they're just in denial, but I'm pretty sure that one doesn't have ME/CFS, or anything close to it. In addition to exercise making her feel more energetic, she just doesn't have the look in her eyes that ME patients usually have.

 

[Valentijn]

I left a brief comment, awaiting moderation (all comments are moderated):

Here's a simple way to determine if you don't have ME/CFS: does exercise make you feel better? If the answer is "yes", then you don't have it. Please go back to your doctor, insist on a proper diagnosis for your health issues, and stop spreading extremely harmful misinformation about ME/CFS to the public.

It's a bit snippy, but I really wish celebrities would stop using ME/CFS as their "triumph over adversity" story when they have no frigging idea what they're talking about.

 

[Sasha]

Let's not give this poor woman a kicking, but this is a good opportunity to point out that the P2P report has recommended retiring the Oxford 'CFS' criteria because they're far too inclusive of non-ME cases.

 

[Valentijn]

Let's not give this poor woman a kicking, but this is a good opportunity to point out that the P2P report has recommended retiring the Oxford 'CFS' criteria because they're far too inclusive of non-ME cases.

She's giving us a kicking, whether she intends to or not. I've not got a problem with kicking back a bit

 

[Revel]

Well, I did a little reading up on Johanna, since I hadn't heard of her before.

It would seem that she is one of the 'lucky' ones who are diagnosed with CFS in their teens, struggle for a few years and then achieve long term remission with minimal to nil debilitating symptoms to speak of. Since she was a competitive athlete when first taken ill at 17, her current regime of exercise, good nutrition and regular sleep is something she has probably been well practiced at from an early age.

To be fair to Johanna, it would appear that she was somewhat taken aback by the headline and the direction that the article took, describing it as "overly dramatic". I am guessing that building the article around an illness she had over 20 years ago wasn't quite what she had expected when she agreed to the interview.

So, another piece of journalism that makes it appear that a cure is within our grasp, if only we were more proactive about it. What does the media have against us? Or am I just being paranoid? Is paranoia part of my "false illness belief" ?

 

[Sasha]

She's giving us a kicking, whether she intends to or not. I've not got a problem with kicking back a bit

Lack of patient education in the UK about ME and CFS and exercise and the whole diagnosis debacle is due to failures in the medical establishment and the media. It's not the fault of patients. Not all of us are aware of the politics, either.

Whether she's had ME or not, or whether she's been lucky enough to make a substantial enough recovery so that she can exercise, she's had a serious illness of some sort.

I think she's well-intentioned, and as @Revel says, the article wasn't under her control.

I think we'll make more friends and educate more people through compassion than kicking (though I understand your frustration with the article).

 

[ukxmrv]

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

 

[Min]

They are not posting any comments.

 

[Snowdrop]

To be fair to Johanna, it would appear that she was somewhat taken aback by the headline and the direction that the article took, describing it as "overly dramatic". I am guessing that building the article around an illness she had over 20 years ago wasn't quite what she had expected when she agreed to the interview.

If that's the case then let's hope that this is an eye opener for her about how the media is misrepresenting how ME is experienced by others where PEM makes her 'cure' impossible.

And of course, the 'cure' for this kind of article is a solid biomarker that identifies the PEM ME sufferers. Meantime, how do we reverse the media tide of misinformation?

 

[Wildcat]

.
@Revel wrote:
"To be fair to Johanna, it would appear that she was somewhat taken aback by the headline and the direction that the article took, describing it as "overly dramatic". I am guessing that building the article around an illness she had over 20 years ago wasn't quite what she had expected when she agreed to the interview."



Where did Johanna Griggs write that? Was her statement about the Mail article. And is the Mail article the same as the TVWeek article?



On Twitter Johanna states that the TVWeek article was "accurate" and "authorised", but with an "overly dramatic cover line."
https://twitter.com/JohGriggs7/with_replies
.

 

[Revel]

@Wildcat, Johanna was asked to confirm that this was a genuine interview that she had actually taken part in because there had been a case in the recent past where comments were attributed to her that were not hers.

I suspect that it was most likely the journalist involved who chose the "overly dramatic" headline and then wrote the piece to back it up. Hence, Johanna's reply, which made me think that while the quotes and information was accurate, the spin of the article was not necessarily her doing.

I doubt it even occurred to her at the time of the interview that she would end up doing the CFS/ME community a disservice, which is a shame.

 

[worldbackwards]

she just doesn't have the look in her eyes that ME patients usually have.

You mean the hunted one?

What does the media have against us

I'll doubt the media cares much about us either way. It's just that the 'triumph over adversity' line sells more papers better than the 'nothing to be done' line, which is, all things considered, a bit of a downer.

 

[Wildcat]

.
@Revel. Where did Johanna say those things? On Twitter she states that the TVWeek article is authorised and also accurate. Is the TVWeek article different to the Mail article?

 

[alex3619]

I no longer recall the details with Joanna (who I have known about for a very long time) but my guess is that she had post viral fatigue. Whether or not this became ME is another question.

There is nothing objectionable in the article, in terms of details. Its how its packaged and presented, which is probably due to the editor, that is the issue. It implies more than states anything objectionable.

 

[Woolie]

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

@ukxmrv, she's my age and I got diagnosed in Australia with CFS around the same time. Fukuda criteria. Johanna's sounds like a common scenario, especially amongst sports people, who seem to be particularly vulnerable to MECFS (maybe due to maintaining an intensive exercise schedule when harbouring infections). Of course, the criterion of 50% loss of function is easier for them to achieve, so many of these cases maybe milder than those in non-athletes.
(edit: sorry, that's Fukuda criteria)

 

[GracieJ]

She doesn't have what I have, or I would have been well inside two years, back in about 1992.

Hit the gym, sleep, and pace? I wish it worked for this.

This is a disservice to both sides. I would imagine this lady would assume in a conversation that she and I are dealing with the same symptoms when that is not true at all. Where are PEM, OI, digestive issues, energy production issues, brain fog and cognitive dysfunction, headaches, muscle pain, etc?