I'm in an article in the Globe and Mail

[Jody]

I'm in this cfs article by Carly Weeks in the Canadian newspaper, Globe and Mail. It will be in tomorrow's newspaper apparently. It's online right now.

Sick and tired of being called lazy, chronic fatigue sufferers fight back

 

[August59]

Congratulations Jody! It was a very good article and thank you!

 

[Jody]

Thank you August.

 

[WillowJ]

good work, Jody!

 

[Undisclosed]

The title of this article is horrible -- "chronic fatigue" just promotes the stigma.

 

[Jody]

good work, Jody!

Thanks willow.

 

[jeffrez]

So aggravating. "Because there is not a test for it." There are plenty of tests, including NK function, cerebral spinal fluid proteins, ATP profile test, salivary cortisol tests, and more - all of which typically show abnormalities from 'normal' controls.

How about: "There are numerous studies (4,000+) in the scientific literature documenting biological abnormalities in patients with chronic fatigue syndrome, but the mainstream doctors and medical community choose to ignore the science and laboratory findings in favor of unproved and in many cases discounted psychological explanations." ?

 

[usedtobeperkytina]

Every

Thank you Jody. It takes courage to have your name for the public to see as having this illness. While most articles will have something not perfect to our liking, we are winning the war because reporters are getting most of it right.

Tina

 

[Jody]

Thank you Jody. It takes courage to have your name for the public to see as having this illness. While most articles will have something not perfect to our liking, we are winning the war because reporters are getting most of it right.

Tina

Thanks Tina. It was rather nerve-wracking, I'm glad there was only a couple of days to wait after Carly Weeks called me about an interview. We did it within a few days. And then there was only a few more days to wait to see what ended up in print.

I agree that it's encouraging to be getting more press as we've been getting recently. And, as someone who has written articles and done interviews about conditions I was not extremely knowledgeable about myself, I know it can be tricky knowing what sources to use for information. She very likely did the research and went with what seemed like the most reputable sources as far as she knew.

I did interviews and wrote an article on Lyme disease a few months back and felt quite uncertain as to where to find accurate information because I know there's a lot of misinformation about Lyme, just as there is about cfs. I was fortunate to know some people with Lyme who could hook me up with good sources. Otherwise, I'd have been groping in the dark. I mean, when you can't trust the government sources, and let's face it, we can't ... it's hard to know where to turn.

I am relieved to see the slant for us was very positive.

 

[WillowJ]

actually I think the article said there was not a simple diagnostic test, which is true. Even though there are many demonstratable biological abnormalities, there is nothing considered diagnostic. Even NK cells need the scientists to get together and decide on a new/updated definition and diagnostic criteria, in order to be considered diagnostic.

 

[jeffrez]

actually I think the article said there was not a simple diagnostic test, which is true. Even though there are many demonstratable biological abnormalities, there is nothing considered diagnostic. Even NK cells need the scientists to get together and decide on a new/updated definition and diagnostic criteria, in order to be considered diagnostic.

Right, but when they neglect to add the part about FOUR THOUSAND+ studies showing abnormalities, and just include the part about there being " no diagnostic test," it adds to the impression that there's nothing really wrong, "or else it would show up in a test." It does show up in tests; the doctors just choose to ignore the tests because 1) they're not trained in those tests, and 2) those tests don't fit in with their prejudices and biases. And that's the way the public thinks: if there's something wrong, it will show up in tests. If nothing shows up in tests, there's nothing 'really' wrong. That's what contributes to people thinking it's 'all in our heads', and 'there's nothing really wrong'.

It's really time to stop giving these 'journalists' a free pass when it comes to ignoring the fact that multiple biological abnormalities in the majority of genuine CFS patients are and have been documented for years.

 

[meadowlark]

Naturally, I think the article could have been more authoritative on ME/CFS itself, but as someone who appealed the denial my Ontario disability case right to the courtroom and won, I can only shout congratulations to the skies. All I had to do to get disability was show the government I wouldn't go away, and that was bad enough. This was much, much harder. What a great victory. I hope you are dancing--emotionally, at least.

 

[WillowJ]

Right, but when they neglect to add the part about FOUR THOUSAND+ studies showing abnormalities, and just include the part about there being " no diagnostic test," it adds to the impression that there's nothing really wrong, "or else it would show up in a test." It does show up in tests; the doctors just choose to ignore the tests because 1) they're not trained in those tests, and 2) those tests don't fit in with their prejudices and biases. And that's the way the public thinks: if there's something wrong, it will show up in tests. If nothing shows up in tests, there's nothing 'really' wrong. That's what contributes to people thinking it's 'all in our heads', and 'there's nothing really wrong'.

It's really time to stop giving these 'journalists' a free pass when it comes to ignoring the fact that multiple biological abnormalities in the majority of genuine CFS patients are and have been documented for years.

that's true too. that there isn't a diagnostic test is a serious problem (which should be solved soon, hopefully by April or June)... but that news articles (and often medical journals and texts) do not mention the tests there are available and when they rarely cover any new biomedical finding it's as "the first evidence of anything objective"... this is not only bad journalism (and bad medicine) but also contributes to the human rights abuse being perpetuated against us.

 

[Min]

well done and thank you Jody

 

[jeffrez]

that's true too. that there isn't a diagnostic test is a serious problem (which should be solved soon, hopefully by April or June)... but that news articles (and often medical journals and texts) do not mention the tests there are available and when they rarely cover any new biomedical finding it's as "the first evidence of anything objective"... this is not only bad journalism (and bad medicine) but also contributes to the human rights abuse being perpetuated against us.

Absolutely. It's unethical to leave that information out in a discussion of lab testing, imo.

I notice that same stat in your sig. The quote from the Harvard doc was exactly what I was thinking of when I wrote my comment. I think he further said something like (to paraphrase): "there is no debate anymore. The debate is over. It's real." Instead, this author wrote the piece from the standpoint that there is still a debate. In reality, there isn't. In some people's minds there might be, including the UK/CDC psychologizers, etc., but in reality there is no debate. It's definitely a 'real' disorder, with multiple causes. Journalists need to start writing from that point of view, imo, instead of privileging the mainstream viewpoint that is clearly shown and documented to be wrong.

 

[SOC]

Thank you Jody. It takes courage to have your name for the public to see as having this illness. While most articles will have something not perfect to our liking, we are winning the war because reporters are getting most of it right.

Tina

Thanks, Jody, for doing this interview and thereby educating many more people about the realities of ME/CFS. As Tina said, no article is perfect, but we benefit when the article, like this one, gets most of the story right.

Good job!

 

[garcia]

The title of this article is horrible -- "chronic fatigue" just promotes the stigma.

I have to agree with this.

 

[Merry]

Thanks Tina. It was rather nerve-wracking, I'm glad there was only a couple of days to wait after Carly Weeks called me about an interview.

Thanks, Jody, for your willingness to be interviewed - a willingness to expend limited energy to speak for others.

 

[Mij]

uggh, what a terrible article. It's truely a disservice to us, it doesn't bring light to this illness at all. A story about a women who was too "fatigued" to continue her duties but found a naturopath who "believed" her. Sometimes I think it's best to not write anything.

 

[dannybex]

uggh, what a terrible article. It's truely a disservice to us, it doesn't bring light to this illness at all.

I guess you must've been reading a different article.

A story about a women who was too "fatigued" to continue her duties but found a naturopath who "believed" her.

Yes, how dare they write about someone who is actually getting better!

Someone btw, who has been sick for 19 years but has finally started to improve in the last 4 years, someone who's husband has FM, and who's son also has CFS/ME. Someone who's contributed a great deal to these forums, and to spreading the word about how devastating it can be living with this illness on her own blog and elsewhere, and someone you've insulted with your shameful comment.

Sometimes I think it's best to not write anything.

Yes, sometimes it is.

GREAT JOB JODY!