I'm in an article in the Globe and Mail

[jeffrez]

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.

I agree. I think because Jody was in it and made a positive contribution people are being a little blinded to the fact that it was actually a pretty crap article. If I didn't have CFS or know anything about it, I wouldn't come away from that article being any more informed or sympathetic about CFS. On the contrary, I'd probably think more than ever that it actually *was* all merely in people's heads. The article may have been well intentioned, but it was poorly executed, imo.

 

[garcia]

I agree. I think because Jody was in it and made a positive contribution people are being a little blinded to the fact that it was actually a pretty crap article. If I didn't have CFS or know anything about it, I wouldn't come away from that article being any more informed or sympathetic about CFS. On the contrary, I'd probably think more than ever that it actually *was* all merely in people's heads. The article may have been well intentioned, but it was poorly executed, imo.

Agree 100% Mr Kite. These kinds of articles do not help us one bit. That is not meant to be a criticism of Jody, but of the person who wrote it.

 

[dannybex]

Agree 100% Mr Kite. These kinds of articles do not help us one bit. That is not meant to be a criticism of Jody, but of the person who wrote it.

I respectfully disagree that this article did not help us "one bit". At least this one talked about the discrimination we face, and how we have the added burden of convincing people, including doctors and employers (emphasized by discussing the case filed by Ms. Pannaci).

It wasn't perfect of course, and I agree with Mr. Kite and others who have pointed out the error of this particular paragraph:

"There is no blood test or other exam that can positively identify CFS. Rather, CFS is a diagnosis of exclusion, meaning it is made only after doctors have ruled out other possible conditions."

That paragraph was unfortunate, and certainly it would've been very helpful to mention some of the tests that do show differences, even if most docs won't order them, nor will insurance cover them. It still would've been helpful.

My earlier post was triggered in response to the insulting comment directed at Jody, which was indeed, IMHO, "crap".

 

[Dorothy]

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.

I personally think that the article was better than average for one thing, early on it described CFS as a complex disease rather than a fatiguing condition, which is how its often characterized in articles. And although it did focus on lack of energy rather than neurological symptoms, it did make the point that these patients are truly ill and are unfairly stigmatized in the workplace and by the general public and physicians as well. Thats progress. I really havent seen any perfect newspaper articles or magazine articles in a long time, but on the whole things are very slowly improving. I suppose some people might come away with the idea that CFS isnt that serious if you can see a naturopath and feel better, but on the whole I thought that the overall point of the piece was that people can be seriously disabled and theyll have a better outcome if they can get good medical care.


Its unfortunate that there was a quote from an associate director of behavioral psychiatry and research rather than somebody such as Dan Peterson but the quote itself at least described how hard it is to do even ordinary activities such as brushing teeth.


I do agree that its a shame that journalists arent aware of how many measureable physical abnormalities are present in ME/CFS, and it would be nice if they would mention these but theyll never find them if they use the CDCs web page as background info. I have a question though isnt the idea that there are over 4000 articles describing abnormalities in CFS a bit exaggerated? I looked on the National Library of Medicine website (PubMed, peer reviewed journal articles), and using the keywords chronic fatigue syndrome I found a total of 4375 articles but after scrolling through a bunch of pages, I found that many of these are psych-related studies, or off-topic (relating to ordinary fatigue or fatigue from other conditions), or negative studies, or social aspects of CFS, or general reviews, etc. etc. (Ive checked this site before over the years). Unless the 4000 is counting many smaller unpublished studies, or non peer-reviewed publications, Id have to guess that maybe 2000-3000 articles actually describe specific organic abnormalities, which is still a VERY impressive number of course. Is somebody somewhere keeping a tally of all the articles that show physical abnormalities? Ive seen many different numbers used, usually from 2000-5000. At any rate, people definitely should write to journalists and let them know that a whole lot of documented abnormalities exist, and many have been known to exist for over 2 decades. PubMeds web page is http://www.ncbi.nlm.nih.gov/pubmed/


On nice thing is that when you use the keywords myalgic encephalomyelitis there are now 271 articles that show up years ago the site would just shuffle me to the Chronic fatigue syndrome list.

 

[Mij]

This article reads like something that was written 25 years ago. Boy, I wish I had fatigue, sore throat, muscle pain and headaches then I could work! lol

I also live in Ontario and here it's referred to as ME so I don't understand where Jody is coming from with this article. All the hard work my ME specialist contributed to the Canadian Definition Criteria, and so much so that he had to take a hiatus 8 years ago from seeing patients and now this stupid article comes out.

Just pathetic.

 

[Hope123]

Thank you for doing the interview, Jody.

I think a definite strength of this article is focus on the work discrimination faced by the federal employee and the emphasis on how debilitating this illness is -- many articles don't touch how the most severe folks can't do basic things. Many illnesses, even serious or terminal ones, have cases of people who spontaneously remit or recover -- no one knows why, whether it was a particular treatment (alt or mainstream) or just the natural history of this one individual's illness. I would not be surprised if there were cases also in CFS although I have written people about the poor general recovery rate (less then 5% on average in a large review study as opposed to what the CDC has) and the pitfalls of past prognostic studies in CFS.

For people who don't like this article, I suggest you write the reporters and/or offer yourself up for an interview as possible. Contact Help A Reporter Out (HARO) which matches reporters with sources:
http://www.helpareporter.com/

 

[dannybex]

This article reads like something that was written 25 years ago. Boy, I wish I had fatigue, sore throat, muscle pain and headaches then I could work! lol

I also live in Ontario and here it's referred to as ME so I don't understand where Jody is coming from with this article. All the hard work my ME specialist contributed to the Canadian Definition Criteria, and so much so that he had to take a hiatus 8 years ago from seeing patients and now this stupid article comes out.

Just pathetic.

Perhaps there was a similar article 25 years, ago, but did it include the discussion of how folks with ME/CFS are discriminated against, and not believed, etc., as this article did?

It's also my understanding that in the Canadian Definition Criteria document, our illness is referred to as ME/CFS.

http://www.mecfsforums.com/wiki/Revised_Canadian_Consensus_Definition

Anyway, if you're so upset that others are recovering (you don't know how severe Jody's symptoms were a decade ago do you?), and think the article was pathetic, then perhaps you could contact the author (she's written about other patients) and describe your situation, and she might feature you in an upcoming article?

 

[Mij]

Perhaps there was a similar article 25 years, ago, but did it include the discussion of how folks with ME/CFS are discriminated against, and not believed, etc., as this article did?

It's also my understanding that in the Canadian Definition Criteria document, our illness is referred to as ME/CFS.

http://www.mecfsforums.com/wiki/Revised_Canadian_Consensus_Definition

Anyway, if you're so upset that others are recovering (you don't know how severe Jody's symptoms were a decade ago do you?), and think the article was pathetic, then perhaps you could contact the author (she's written about other patients) and describe your situation, and she might feature you in an upcoming article?

Unfortunately you are missing my point with your over sensitivities, you need to calm down. Personal journey's and experiences should be kept in diaries, journals, shared with close family and friends, not presented in a public newspaper.
I prefer to let the specialist explain this illness in a medical factual context.

Like I said in my earlier post, this article was a disservice and brings this illness back 25 years.

 

[dannybex]

Whatever.

I guess we'll have to respectfully agree to disagree.

 

[Gamboa]

I live in Ottawa Canada (which is in Ontario) and besides the ME/CFS specialist that I see in Toronto, no ther medical personnel have a clue what ME is. Actually they also don't know what the term CFS is. I have to say chronic fatigue syndrome to them (then they either roll their eyes, snicker or just ignore it all together). I have worked at the Ottawa Hospital for 20 years, first in the Microbiology Lab and then in Pathology, and have found that NOT A SINGLE doctor knows anything about this disease. I also know some who think it is a psychological disorder. I am now off work on LTD and I have found no doctor in Ottawa who could diagnose me, let alone provide any treatment. When I was first off sick I asked a friend, an infectious disease physician, what he knew about ME/CFS and if he could find anyone to help me. Shockingly he said he knew NOTHING about it and after asking around he found no one in his circles that could help me! Needless to say I am envious of those in the USA who have fantastic infectious disease docs like Dr. Montoya (although I realize most people aren't able to see them).

I think many PWC are under the impression that since the Canadian Consensus Criteria document was created here in Canada that we Canadians must have really good care and get respect from the medical community. Unfortunatly that is not the case. Before I saw the ME/CFS doctor in Toronto I was sent to a variety of specialists here in Ottawa (endocrinologist, internal medicine, neurologist etc). None of them had ever heard of the CCC documents and none were interested in getting a copy or learning anything about the disease. My GP does her best but she is nearing retirement and does not have the energy or will to learn something new. I'm sure she dreads everytime I have an appointment with her since I produce more info for her to read.

On the positive side, we in Ottawa have the ME/CFS conference in September to look forward to (brain fog alert: I can't remember the exact name of the conference: I.I.C.F.S.??). Hopefully that will put this disease on the radar of the medical community here in Ontario.

 

[Nielk]

Where would we be without Jody's input? We are lucky to have her. With her stories one by one, she is making more people aware of what we go through. Kudos to you Jody.
Were we each having our stories heard, just imagine the impact.
There is a need for hard evidence based studies but there is also a need for the human stories.

Thanks Jody

 

[ixchelkali]

Unfortunately you are missing my point with your over sensitivities, you need to calm down. Personal journey's and experiences should be kept in diaries, journals, shared with close family and friends, not presented in a public newspaper.
I prefer to let the specialist explain this illness in a medical factual context.

I disagree. I think that personal stories put a human face on the disease for people who aren't familar with it. It's what conveys the severity and the impact of the disease. It's the only way we have of counteracting the effect of the stupid name, to let people know that it's not simply being tired all the time. Generally, people don't care about disease in the abstract, but personal stories show them how real people are affected. Even yesterday's Wall Street Journal article about the various recent biological research into ME/CFS used a personal story to illustate the severity and grab the readers' attention.

Also, the more people get their personal stories known, the less the disease will be percieved as something that happens to "the Other." The Other aren't people I might know, aren't people in my neighborhood, aren't people whose lives sound like mine. They're those people over there who aren't like me, who probably brought this on themselves. The more people with ME/CFS tell their stories, the more healthy people will realize it can happen to anyone.

I think that those who go public with their stories are courageous and deserve our thanks.

 

[garcia]

I think that personal stories put a human face on the disease for people who aren't familar with it.

I agree that we need human stories. However the stories we need are of those with the most devastating form of illness. Those who can not speak for themselves and are shunned and forgotten by society. No one takes this disease seriously because the image that is portrayed in the media is of a tired middle-aged woman with "chronic fatigue" who finds some alternative cure or other and simply gets better after a while. This is not my experience of this disease, nor of anyone I know.

See Patient Advocate's excellent most recent blog post:
http://cfspatientadvocate.blogspot.com/2011/03/what-boys-want-dad-is-clarity.html

 

[Mij]

Unless this illness is clearly defined as a DISTINCTIVE disease process then personal stories are not informative or helpful to us at all.

You are overestimating people reading these article if you truely believe they come away with an understanding on how devastating this is to live with, they come away with it thinking . . . . well they might have it too because they have aches, fatigue, cognitive problems, etc. God help us.

It's a sad day when you are just happy with scraps.

 

[WillowJ]

Like I said in my earlier post, this article was a disservice and brings this illness back 25 years.

The article certainly had it's failings, but it's probably not possible for a single news article to, all by itself, bring the disease back 25 years, especially not when the disease is already in an unfairly-derided position. (Not sure where you are from, but where I'm at there has been NO substantial favorable change in perception of this Disease in the last couple of decades, except for those who have favorably noticed the Lombardi et al. study and other subsequent developments)

Thank you for doing the interview, Jody.

I think a definite strength of this article is focus on the work discrimination faced by the federal employee and the emphasis on how debilitating this illness is -- many articles don't touch how the most severe folks can't do basic things.

Quite so. Thanks for your participation, Jody.



I do think it would help if some of us would write to the reporter and give some info about the tests that are available but doctors don't know to run, and wouldn't know how to interpret anyway, and the CDC says not to use (except in research settings)--even though they may be well-validated in Fukuda inclusion studies, and NHS says not to use (no exception clause even for research).

 

[Cort]

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.

I think you've really got to be careful about this 4,000 number. That includes letters, editorials, reviews and all sorts of 'studies' only a few of which are actually on biological abnormalities in CFS....and most of those are small, wretched little efforts . IF the biggest funder in the world - the NIH is only funding 1-3 new studies on CFS pathophysiology a year - then there's no way we're going to have 4,000 studies showing abnormalities. The problem is too little research..another problem is inconsistent results.....but the main problem is too little biological research....lots of talk and little research....

An NIH search for MS studies brings up 895 studies!
An NIH search for CFS studies brings up 48 and most of those are not on CFS!

Of course you're right - substantial abnormalities have been shown in ME/CFS..low blood volume, NK cell problems, HPA axis, metabolic dysfunction, fMRI problems, HRV problems, RNase L...I'm sure I've forgotten a good number - and it would be great if they would mention that.

Nice photo Jodi! and overall a positive article..

 

[ixchelkali]

I think you've really got to be careful about this 4,000 number.

Cort, do you have any suggestions about what would be a more accurate number?

 

[gracenote]

I think you've really got to be careful about this 4,000 number. That includes letters, editorials, reviews and all sorts of 'studies' only a few of which are actually on biological abnormalities in CFS....and most of those are small, wretched little efforts . IF the biggest funder in the world - the NIH is only funding 1-3 new studies on CFS pathophysiology a year - then there's no way we're going to have 4,000 studies showing abnormalities. The problem is too little research..another problem is inconsistent results.....but the main problem is too little biological research....lots of talk and little research....

An NIH search for MS studies brings up 895 studies!
An NIH search for CFS studies brings up 48 and most of those are not on CFS!

This is where I've seen the 4,000 number.

The bad news is we dont know what causes it or how to treat it successfully. But the good news is that there are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness. Its not an illness that people can just imagine that they have, and its not a psychological illness. In my view, that debate, which has raged for 20 years, should now be over. Dr. Anthony Komaroff, Harvard Medical School

 

[dannybex]

It's a sad day when people can't disagree on this forum without throwing in personal insults. It's a sad day when those who put themselves out there in public to have their stories told are insulted by their fellow patients, as if they/we don't get enough of that from doctors, comments on the press articles, etc. without doing it to each other. It's a sad day when every effort anyone makes is ridiculed or criticized. It's a sad day when anyone who isn't sounding 100% angry and negative is considered naive.

No, I don't think people reading these articles come away with a real understanding of how devastating it is. But I think that without the human stories they won't CARE how devastating it is. Why do you think the muscular dystrophy telethons featured "Jerry's kids"? Why do you think the March of Dimes used poster children to raise money for polio? It works.

And BTW, Jody is not, nor does she look like, "a tired middle-aged woman."

Well said.

It's no wonder that more people don't come forward.

 

[Mij]

It's a sad day when people can't disagree on this forum without throwing in personal insults. It's a sad day when those who put themselves out there in public to have their stories told are insulted by their fellow patients, as if they/we don't get enough of that from doctors, comments on the press articles, etc. without doing it to each other.

This article actually promotes this attitude you mention above. I read this thread initially thinking it would be informative since someone on this forum contributed but came away with why would someone be part of this poorly written article and think this was helpful to us.

It's a sad day when every effort anyone makes is ridiculed or criticized. It's a sad day when anyone who isn't sounding 100% angry and negative is considered naive.

You don't have to angry just be productive.

No, I don't think people reading these articles come away with a real understanding of how devastating it is. But I think that without the human stories they won't CARE how devastating it is. Why do you think the muscular dystrophy telethons featured "Jerry's kids"? Why do you think the March of Dimes used poster children to raise money for polio? It works.

The general puplic doesn't have to understand the disease pathology or disabilities of MS, Polio, muscular dystrophy etc to know they can be devastating, these illnesses are recognized and taken seriously- this is why they have telethons for them.
Unfortuneately we are not in that position and the public HAS to be educated/informed first and foremost, otherwise diluted human stories are not effective at all.