David Tuller article regarding stigma of "CfS", HHS, IOM - speaks withBurmeister

[Nielk]

http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome

An estimated 1 million Americans are debilitated by the condition, which isn’t well understood by the medical community. Advocates and patients argue this is in part due to a continued stigma caused by its unserious-sounding name.

Excerpt:

So when the Institute of Medicine announced provisional members of the panel last month, many patients were angry that more than half of the members — whatever their accomplishments in their own fields — were not known to have any professional expertise in ME/CFS. Many clinicians and researchers with experience in the field have already endorsed a set of diagnostic criteria that they say should be used as the starting point for any new case definition.

“I can’t imagine any other field where this would be happening,” said Burmeister, who grew up in East Germany, moved to the U.S. in 1999, and became a citizen in 2012. “You wouldn’t have rocket scientists come up with guidelines for heart surgery. To have a majority of nonexperts on the committee — of course this is crazy.”

A broad or imprecise definition of the illness could have a ripple effect. Patients like Burmeister fear that flawed results will undermine research into organic causes and lead to treatments more appropriate for depression and other psychiatric conditions than for their illness.

For diseases with reliable tests for biomarkers that indicate the presence of an infection or other abnormal physiological phenomenon, a positive result might be all that is needed for an accurate case definition. But for conditions identified through symptoms, like Gulf War Illness and ME/CFS, creating a case definition that includes those with the illness while excluding those without it is far more difficult, especially if some of the symptoms are non-specific and subjective.

 

[Nielk]

Please like and share from the Buzzfeed site on to Facebook and Twitter widely.

 

[AzizaJ]

Via Jeannette:

IMPORTANT: Please post this from the Buzzfeed website on FB and Twitter even if you have already posted it before. We need to get it trending to show the Buzzfeed folks that this is a hot topic right now. Buzzfeed really cares about things going viral. Let's make it happen. This is a huge break for us!!!

This will hopefully be our gateway to more coverage of the IOM issue. Also, please like it on Buzzfeed.

(It's not about self promotion. I have struggled with the decision to talk about my personal life that much. But I figured better me than somebody who isn't solid on the IOM issue.)

Thanks guys!!!

 

[Nielk]

Please go to this thread http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome

Like it and share it on Facebook and Twitter. We need this to go viral.

It is also worth the long read. An excellent, comprehensive synapses of what is going on.

 

[Bob]

It's a very well written article.

I like this:

Leonard Jason, a professor of psychology at DePaul University in Chicago and a widely respected ME/CFS researcher, said that a good strategy for distinguishing between the illness and depression is to ask patients what they would do if they suddenly recovered. Those suffering from a major depressive disorder, he said, would likely say they didn’t know. “But someone with ME/CFS would probably begin making lists of all the things that they wanted to do,” he said.

 

[slayadragon]

David Tuller is a UC Berkeley journalism professor who has frequently written about ME/CFS for The New York Times.

This new article -- published as an experiment on BuzzFeed -- brings up mold and other toxins as a possible factor in the disease.
http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome

 

[alex3619]

I think there is already a thread on this article.

PS Yes, here http://forums.phoenixrising.me/inde...-iom-speaks-withburmeister.27858/#post-424760

 

[Undisclosed]

I think there is already a thread on this article.

PS Yes, here http://forums.phoenixrising.me/inde...-iom-speaks-withburmeister.27858/#post-424760

I have merged the threads.

 

[Nielk]

There are many interesting comments there. It is worth a read and to add your own two cents. The more comments the better.


http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome

 

[slayadragon]

ProHealth has also picked up the article.

http://www.prohealth.com/library/showarticle.cfm?libid=18630

 

[Antares in NYC]

http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome
More than 1 million Americans suffer from chronic fatigue syndrome, according to the Centers for Disease Control, although many experts believe that the agency’s figures are somewhat inflated.

Amazing article, but I have to disagree with that quote. I don't believe for a second that only 1 million people are affected by this. Also, do you guys know which experts suggest that the 1 million figure is inflated?

From my personal experience, I have a hunch that the numbers may be much higher:

- I spent almost 15 years bouncing from doctor t doctor until I got a diagnosis. I am convinced that there has to be scores of people, particularly those not bed-bound by the disease, that may have been improperly treated for years for things like depression, anxiety, sleep apnea, ADHD, you name it. Doctors will quickly assign an easy diagnosis and move on, leaving so many to deal with the deteriorating condition.

- I know this is just anecdotal, so it probably means nothing, but wanted to share it: in the past year alone, 4 people have been diagnosed with "CFS" within my extended circle of friends, most of them in NYC. Of these 4 people, 2 are bed-bound, 3 of them officially diagnosed ME/CFS (the last one has been diagnosed with inconclusive thyroid issues).

Again, one single year, 4 people I know diagnosed. I have gone from being in the dark about ME/CFS for 14 years, to a rude awakening with the diagnosis, to soon finding myself in company within my circle. I know it's anecdotal, but I don't buy the CDC estimation of 1 million affected with ME-CFS. That's the same organization that named it "chronic fatigue syndrome" and basically dismissed it as "mass hysteria", while at the same time classifying it as a priority emerging disease.

Does anyone know how they have estimated the number of people affected with ME/CFS in the USA?

 

[slayadragon]

Prevalence figures are a real challenge.

On another note: I think it's a mistake to assume without study that the prevalence of the disease is the same in all parts of the U.S.

For instance, if indeed being exposed to toxic mold is a risk factor for getting the disease (as mentioned in the article), then that could explain why many people in NYC might have come down with ME/CFS in the past year: due to the mold in buildings subsequent to the flooding there a little more than a year ago with Hurricane Sandy.

Outdoor toxins in some places conceivably could play a role as well.

This needs to be considered when prevalence is studied, in my opinion.

 

[Nielk]

@slayadragon - I got ill about 11 years ago in NYC after multiple aerial insecticide spraying due to West Nile virus from mosquitoes. Do you think there could be correlation?

 

[slayadragon]

I think it's plausible that chemicals that we know cause neurological and immune system issues could cause our systems to become damaged and thus susceptible to the smorgasbord of pathogens that we see in ME/CFS. That could be insecticides, mycotoxins or many others.

So this would be a good thing to put some study into.

The thing about mold is that it would be an easy and relatively inexpensive study to do. Here is a proposal that I wrote to Open Medicine Institute about this topic, for instance.

http://www.paradigmchange.me/support/ermi-study-proposal.pdf

But it may well be that moldy homes are just the tip of the iceberg, and that other environmental chemicals that are not so easily measured (like those insecticides or radiation or fire retardants or industrial chemical spills or whatever) may be having an effect that is much more difficult to measure.

 

[Antares in NYC]

@slayadragon :

I think these are the type of questions that the CDC, the NIH and other organizations should be asking. This should be part of the research that is not being done to get to the bottom of this disease. I too wonder if there are regions with a higher incidence of ME/CFS than others. Globally, I am aware that the USA and Japan have the highest number of cases, but this may have to do with awareness. If knowledge of ME-CFS is awful in the USA, imagine in less affluent countries.

@Nielk :

Because of the lack of research and medical ignorance of the disease, many of us desperately try to figure out when, how, why it started. I feel there’s a pathogen involved (possibly a enterovirus), but the path to the CFS onset infection may be opportunistic, aided by a number of circumstances that act as a catalyst: exposure to toxins, extreme stress, etc.

In my case, it started soon after I moved to Boston, living in a moldy apartment, and after a few months of extreme stress. I did get an awful flu-like illness for about a week, and I have been there since. That initial onset did something to my system, turned it upside down, and I have remained in that hellish state since then.

So many theories to this disease. So many plausible explanations. So little research or funding to figure it out.

 

[slayadragon]

I recently have been reading this book which describes in detail how toxicity of various sorts may have been a factor in GWI and in the "mystery diseases" that have been sufferers by survivors of other environmental disasters (such as 9/11 in NYC, the Exxon Valdez in Alaska, and Hurricane Katrina in New Orleans).

http://www.amazon.com/Amputated-Lives-Coping-Chemical-Sensitivity/dp/0967561914/

Just today in Time, an article about the role of pesticides in Alzheimer's:

http://healthland.time.com/2014/01/28/study-ddt-pesticide-linked-to-alzheimers-disease/

A snippet of an interview with Mady Hornig, a researcher at Columbia University who works with Ian Lipkin, about the role of toxins in neuroimmune disease:

https://www.facebook.com/video.php?v=10100146488602472

Lisa

 

[JayS]

I believe the 1 million number is based on the Fukuda criteria we tend to characterize as being too broad. So far as I'm concerned, when it comes to Ramsay ME/CCC, that is definitely an inflated number.

 

[slayadragon]

Unless, of course, the prevalence of the disease is unevenly distributed in the U.S. and the CDC did its prevalence studies in places where the disease is less of a problem.

My own experience in Wichita was that I felt GREAT there, for instance. So I definitely do not find it surprising that of the "CFS" patients that researchers found in Wichita, their "CFS" was not very severe (and thus that many of those folks might not have had CCC ME/CFS). In other places that I have been, I suspect that the prevalence of people with more severe illness (qualifying for CCC) might be much higher.

Another issue with regard to the disease is whether severely ill patients were captured in prevalence studies. For instance, I went through long periods of my own illness where I categorically did not answer the phone. I just let it ring. So I would not have been counted in a prevalence study done with telephone calls, during that time.

So in general, I think it's possible that there may be a million people in this country with CCC ME/CFS. There may be a good many less than a million. There may be a good many more than a million. I don't think we have enough information at present to know.

 

[alex3619]

The same inflation of numbers is occurring in Australia. Its now often quoted as 250,000 CFS patients here in Australia, or about 1.1% of the population. I think 100,000 might be more accurate. However we lack epidemiology. If CFS or ME is on a growth explosion, then we need to know. Lack of ongoing surveillance allows anything to happen, unseen by the authorities.

 

[JayS]

Well, Wichita is probably defined by Reeves' 2.54%. Previously Lenny Jason had estimated Fukuda at 0.4%. True, nothing we have is definitive. But I don't mind speculating from what there is out there.

Here's Lenny Jason responding to Reeves some years back:

http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105/Default.aspx

And then, more recently, there's this, from the UK:

http://www.biomedcentral.com/content/pdf/1741-7015-9-91.pdf

Obviously there are plenty of differences between locations, and factors that can be taken into consideration--and a ton of variables we just don't know enough about.

The 0.4% prevalence translated to approximately 800,000 people--15 years ago. Again, that's Fukuda. Population was approximately 275 million in US at the time, I'm guessing.

The ludicrous 2.54% in the mid-2000s works out, based on an increased population of 300 million, to more than 7 million CFS patients.

Extrapolating the more recent UK numbers to the US comes with its own pitfalls. But, for the sake of argument, Fukuda coming in at .19% of 300 million means 570,000 patients; CCC at .11% translates to 330,000.

I'm fairly sure that's not enough to say that the research indicates a fairly low prevalence in the U.S.--but it makes far more sense to me than anything near 1 million.