Tuesday, September 05, 2006

Is the CFIDS Assoc. just stressed or snoozing with the CDC?

Recently the CDC came out with a new study that has been talked about quite a bit on most CFS/ME lists and groups. Many of us were urked, to put it mildly, because after misusing the monies tagged for CFS research and finally having to produce something that something turned out to be merely a study which, apparently, was done to prove someone's pet theory. Some have gone so far as to name who that someone is.

While CFS/ME did get some media attention the attention it got probably caused more bad than good as the message that went out implied that those of us with CFS can't handle stress. That's the very short version of it, and isn't it only the short version that people hear and remember?

If that weren't bad enough it seems that at least one large group that is supposed to be advocating on our behalf is now marching down that same rail - like a train on a dictated track. I admit I was a bit surprised to learn about this, but then not. After all the CFIDS Assoc. has been around for quite a while and supposably had a bit of political input yet what have we seen done in the past ten years?

A Hummingbird's Guide To M.E. (an excellent site by the way) has a good article by Jodi Bassett on this subject which is well worth your read.

Just try not to get too stressed about it all --- after all, stress just does us in. Right?



Anonymous linda m said...

hello, zona

TErms like STress, stressor, fatigue,yeah, I agree, it is frustrating the bias and lack of support we are up against. Terms like Input and OUtput would be much better words for researchers to latch onto, since the public understands them to be objective, quantifiable terms, not terms which can be manipulated into pop psychology buzz words, or simply everyday general meanings, that trivialize the suffering of people with ME/CFS.

Have you seen Cort Johnson's website and newsletter, Phoenix Rising? They did a really good job of summarizing that recent CDC research. It is also evident to me that someone in the CDC still has those annoying pet theories which would conveniently villify and blame CFS'ers, be it for "weak genes" or for "weak minds" (so insulting. As far as i am concerned this research is entirely correct about the malfunctioning of the HPA and I think the discovery of the variations in amounts of cortisol receptor and variations in responsivity of receptor are a good start to investigation, but this being one gene of thousands known to be impaired in CFS, the whole inheritance idea is on pretty shakey ground.

I think we can all unequivocally say that we have a terrible time coping with excessive input or output of any kind - be it olfactory, auditory, visual, intellectual, social, emotional or even spiritual. The fact remains that no matter what is true about people with CFS/ME after they have endured years of illness, those who knew them pre-illness would be highly likely to describe them as particularly resilient to this same input and output issue. They were the long distance runners, the high-powered people with a lot of drive and a lot of achievements. So, by the CDC theories, that means they were "secretly" susceptible but didn't notice any ill effects in their lives until magically, suddenly, (conspicuously right after a virus or exposure to chemicals), they all just fell apart. This is a little simplistic, and i think it is safe to say that no matter how upsetting it is to have our lives scrutinized by people who make such conclusions, the CDC and others will soon enough realize that the model they propose does not explain CFS epidemics, MCS and extreme or parodoxical medication reactivity, or numerous other aspects of the whole clinicial and historical picture or ME/cFS. I find it disturbing that North America is all but ignoring the 2005 UK research on CFS biomarkers,(Kerr, et al). IN the abstract even, they name organophosphates and viral damage as common causes of the known impairments in gene expression now proven to be at the root of ME/CFS pathology.

It appears that we are going to have to put up with the terms "stressor" and stress, and fatigue, until massive public education campaigns, massive infusions of research funding are actually applied in an objective way. Old ideas die hard, and so I guess what we have to do is make sure that the next generation of PhD neuroscientists, immunologists and geneticists get good scientific info before it is too late and they are sucked into the great vacuum of bias against CFS'ers.

WE have a paradoxical partner in the American parents who are fighting for autism research in the States. They have managed to raise enough alarm and get Congress to pass the Combating Autism Act, to the tune of 4 BILLION over the next 4 years for research and education(not 4 measly million this year, like the CDC pledge for CFS). Autism is now at a rate of about 1 per 130 children, getting more common, up from 1 per 160 children. If we look at the probable incidence of CFS in Canada (based on the 2002 Health Canada survey statistic of 350,000, since there are no epidemiological studies on CFS in Canada to date), it is at around one per 100 people - twice as common as MS. Yet, we have currently got NO research being carried out into pathology, genetics, genomics, biochemistry or immunology! There are also no doctors and researchers learning about CFS and its importance, and no CFS clinics or clinicians, because CFs is not taught at University in medical schools, nursing, rehab medicine, etc.

We need a Terry Fox or a Michael J but we are all too sick to be an effective lobbying force. Eye contact is important, and how do we make that when we are housebound? Many of the support groups founder under the weight of the load, being run by valiant but sick people.

It is going to take a lot of political will and a lot of money to turn this around. Sadly, all it would take is for some "important" Canadian to have a son or daughter who gets this, and who gets kicked out of school and goes from being an honours student to being called crazy, lazy and a faker, asnd stripped of dignity and opportunity as the rest of us have been for 20-30 years of our lives.

More on all of this anothre time.

I wrote in part to tell you about another site that a fellow CFS'er recommended - it is the site of Nigel Purdey, whose focus is on toxic chemical exposure and its role in several different illnesses. I thought of you because of your particularly high and devastating levels of MCS, and how yours started. Also, Cort Johnson's story might resonate. He had to live in a tent or a stripped down van for years, due to his MCS.

Zona, i don't know your real name, so I don't know if you are already a member of it, but consider joining or checking out the National ME-FM aCtion Network. Why? Because they are an informed and small group of thinking individuals trying to make change in Canadian CFS politics and education. They need more people like us. You are able to write, and they are always looking for people help with their nationally distributed newsletter full of the latest in ME/CFS, FM and Gulf WAr etc science, legal tips and reports. Also, i think you live in WEstern Canada, possibly BC, and that would help too. They also do a lot of lobbying for change, and have made progress on a lot of issues in Canada (you are in Canada, aren't you?).

I do a little networking or researching for them, as able. They (we) are all in the same boat, ie trying to make positive change while being so ill, and they would welcome you I am sure. I know a lot of people shy away from the groups, but this one is a gem, and there are certainly no meetings to be unable to attend. You can find a contact email at www.mefmaction.net.

WEll, i must sign off. I can't check in very often, but do occasionally pass on your blogspot to others with CFS esp. those who are Christian and who have MCS as one of the bigger barriers.

all the best,
linda m,
ME/CFS networker, Alberta

9:47 PM  
Blogger Zona said...

Hi Linda ! Would you email me at zonaszone@gmail.com please. I'd like to talk to you more about this.


1:59 AM  

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