Fact Checking for CFSAC Testimony

[LaurelB]

Hi, all,

I've been slowly working on my CFSAC testimony (it will be written; no video this year) for the upcoming meeting.

I need to check on a few facts.

Can anyone tell me where I can find a source or quote of how much CFS costs the US economy each year (in terms of health care costs, loss jobs, disability payments, etc)? I have heard between 9 and 25 billion, which is a wide range. I'd like to have a more accurate number, and a website or source to quote if possible.

Also, can anyone tell me if the CDC has ever done a clinical study on CFS using antivirals? Not antiretrovirals, but just plain antivirals as Dr. Lerner has done. I'm 99.9% sure they have not, but want to be completely certain.

Much thanks!!

Laurel

 

[Doogle]

The Reynolds study in 2004 (Economic impact of chronic fatigue syndrome) estimated, "The annual total value of lost productivity in the United States was $9.1 billion, which represents about $20,000 per person with CFS or approximately one-half of the household and labor force productivity of the average person with this syndrome."

From The Economic impact of ME/CFS: Individual and societal costs by Jason 2008, "Using ME/CFS prevalence data of 0.42 and indirect costs estimates from Reynolds et al. (2004), the direct and indirect cost of ME/CFS to society was estimated to be $18,677,912,000 for the community sample and $23,972,300,000 for the tertiary sample."

The only antiviral treatment study I know of is was done by Straus (National Institutes of Health) 1989 Acyclovir Treatment of the Chronic Fatigue Syndrome. Straus didn't treat nearly long enough and didn't hydrate the patients properly so, "Three patients had acyclovir-induced nephrotoxicity and were withdrawn from the study." Conclusions were, "acyclovir, as used in this study, does not ameliorate the chronic fatigue syndrome." This study ended the ability of Peterson to give IV acyclovir during this time. Peterson was having some success stabilizing seriously ill patients using IV acyclovir treatment of approximately one months duration.

 

[LaurelB]

Awesome. Thanks, Doogle. Very helpful.

 

[Hope123]

LaurelB, the deadline is coming up fast; it was just posted yesterday but it's SEPTEMBER 17 -- next Friday! They sure didn't give us much time to write.

 

[LaurelB]

YIKES! I didn't even realize that. You're right -- that is not much time at all. Thanks for letting me know. Glad I started early!

 

[frenchtulip]

Federal spending for ME/CFS in 2009

Can someone tell me where I can find the amount spent on CFS by the federal government in 2009? Thank you.

 

[LaurelB]

Not sure if this is what you are looking for:

http://report.nih.gov/rcdc/categories/

Hope that helps!

 

[frenchtulip]

Laurel B.

Thank you.

 

[shiso]

Can someone tell me where I can find the amount spent on CFS by the federal government in 2009? Thank you.

I think in addition to the NIH $5 million that it apparently gave out in grants as indicated on the NIH chart, CDC separately had a budget of $4 or $5 million to conduct its own "CFS" "research" "program". I've seen a source for the number somewhere, but unable to find it right now (sorry).

 

[rescindinc]

Hi Laurel,
Tom Hennessy, jr. here. WAY back in the dark ages in 1989, i did a few calculations with Professor Lenny Jason's numbers. he said something like 267 people per 100,000 had M.E. CFS. the government was saying 4 to 10 per 100,000 at the same time. some other people suggested that we were about 1/3 of 1%. Now they claim 1 million to 4 million people in the US. who really knows and what kind of definition they were using. I said at the time that many of us were teachers and nurses. i think the salary back then of both was an average of about $35,000 per year. i claimed that we had at least 3 ranges of illness. i claimed that we had about 250,000 who were housebound or bedbound. and about 500,000 who could only work or attend school part time. and about 5,000,000 to 6,000,000 who were one chemical, viral, or bacterial insult away from complete and crushing disability. After multiplying 250,000 by $35,000 and adding $17,500 (or half time working) multiplied by 500,000, and I took some percentage, which i now forget of the 5 to 6 million people who were right on the edge, and i came up with close to $9 billion. MANY years later, the government printed that same number. i don't know how they came up with it??? and now, i hear numbers like 25 Billion or more as you listed above. Sorry, that i don't know where you would get more accurate numbers. I feel that our CDC has FAILED miserably, in every possible way regarinding this condition. If Websters dictionary says
to "define" is to "make clear and distinct, to differentiate", and then they come out with estimates of 1 million to 4 millon, then they have failed the public miserably. that number is way to nebulous and non specific for me. you could list opporunity costs of a person making $40,000 per year. and add in 1/3 for taxes that would have been paid, and CNN or Forbes or the National Bureau of Statistics might have average money spent, saved, average salaries etc. As for question number 2. I have only heard of ampligen trials. ampligen is partly an immune modulator which helps the body fight off viruses, but it is not directly an antiviral to my knowledge. I have never heard of the CDC doing such a study. you can email my webmaster at rescindinc.org@gmail. com and write in "Dear Jerry" (his personal Dr, is Dr. Lerner) so, you can ask him if he would give you Dr.Lernter's info. Dr. Lerner has worked at the CDC and NIH, i believe, and he has studied viruses for 50 years! so he would know what studies he has done and how he treats viral conditions. best of luck!, TMH

 

[Dorothy]

Also, can anyone tell me if the CDC has ever done a clinical study on CFS using antivirals? Not antiretrovirals, but just plain antivirals as Dr. Lerner has done. I'm 99.9% sure they have not, but want to be completely certain.

Much thanks!!

Laurel

You can find a master list of CDC-CFS publications going back to around 1993 at

http://www.cdc.gov/cfs/publications/index.html


They are grouped by category - in some cases you can read the entire article, other times it's just the abstract (summary).


I didn't see any clinical antiviral studies. Regarding viruses, it seemed to be mainly negative publications (i.e. can't find the DeFreitas retrovirus, can't find HHV6, etc.) A 1995 study by Reeves et al showed no elevated titers to Herpesviruses or evidence of enteroviral exposure, plus no evidence that any other viruses played a role:


http://www.cdc.gov/cfs/publications/studies_of_causes/seroepidemiology.html


So basically, they wouldn't have been interested in antiviral studies since they never concluded that viruses played a serious role in CFS. Also, here's an interesting 1997 CDC Study concerning immune responses:


http://www.cdc.gov/cfs/publications/studies_of_causes/immune_responses.html

They weren't able to confirm the immunological findings that other researchers had discovered in CFS, but they concluded with this interesting paragraph (concerning CFS cases and controls):

"In this study, no differences were found in white blood cell numbers; immune complex, complement or serum immunoglobulin levels; in delayed type hypersensitivity and allergic responses; NK cell function; and proliferative responses to mitogens and antigens. Marginal differences were detected in cytokine responses and in cell surface markers in the total CFS population. However, when the patients were subgrouped either by the type of disease onset (gradual or sudden) or by how well they were feeling on the day of testing, more pronounced differences were seen."


Well duh!!! I'm sure the subgroup that was feeling very sick had some serious immune issues going on (and probably viral as well). But did they follow up on this and study the sick subgroup? Not to my knowledge. I'd have to agree with people who assert that the CDC was trying its best to NOT find viruses or immune abnormalities in CFS. Some of the publications in that CDC master list are actually intriguing (including one by Dr. Vernon on mitrochondrial dysfunction following EBV), but they seemed to get swallowed up by the biopsychosocial dogma of Reeves.

Hope this helps!

 

[LaurelB]

Thanks, everyone! This is great info. It's making me wish they didn't give a 5 page limit in length. I have enough I want to say to take up 10 pages.

My sentence in question was one where I state that the CDC and NIH have never, to my knowledge, done a single, long-term study on antiviral treatments in CFS -- and it sounds like I can feel pretty confident in making that statement.

Dorothy, those links are really interesting, especially that quote. My testimony is already 5 pages (4 pages if I make the font smaller ), or I'd love to include that in there. It really does seem that the CDC had (and has) no interest in finding viruses or immune dysfunction in CFS.

Tom, the 9-25 billion estimate in cost (as well as the 1-4 million estimate in cases) really is far too broad, and I'm certain that has to do with the poor definition the CDC has of CFS. I decided to stick with the lower number as it's what I've heard quoted most often. I noted that that estimate is for loss productivity alone.

Anyway, I really appreciate all the links and information! I hope it's helping others who are writing testimonies as well. The more who write in, the louder our collective voice.

Thanks again!

 

[*GG*]

My sentence in question was one where I state that the CDC and NIH have never, to my knowledge, done a single, long-term study on antiviral treatments in CFS -- and it sounds like I can feel pretty confident in making that statement.

Dorothy, those links are really interesting, especially that quote. My testimony is already 5 pages (4 pages if I make the font smaller ), or I'd love to include that in there. It really does seem that the CDC had (and has) no interest in finding viruses or immune dysfunction in CFS.

Tom, the 9-25 billion estimate in cost (as well as the 1-4 million estimate in cases) really is far too broad, and I'm certain that has to do with the poor definition the CDC has of CFS. I decided to stick with the lower number as it's what I've heard quoted most often. I noted that that estimate is for loss productivity alone.

Thanks again!

If you are quoting a paper(s) and that is the estimate they give, then I would think it is alright to use it, and perhaps use it to our advantage as to "How poorly studied our illness is?!"

 

[LaurelB]

Thanks, ggingues -- I actually did change my mind and included both studies in the end, as the 24 billion estimate is rather striking compared to the 5 million in research dollars we get.

 

[LaurelB]

I just posted my testimony in the blog section:

http://www.forums.aboutmecfs.org/entry.php?562-My-October-2010-CFSAC-Testimony

Thanks to all those who helped me out!