Pat Blankenship, Judith Wisdom, and Condy Eckerle
Appendix D to the
Statement by Mary McKinney Schweitzer, Ph.D.
Presented to the second meeting of the
Chronic Fatigue Syndrome Coordinating Committee (CFSCC)
October 22, 1997
For Members of WECAN
(The Worldwide Electronic CFIDS/ME Action Network)
WECAN existed from 1996-1999
These three people with CFIDS would have liked to have been at this meeting, but they are not well enough to attend. Here is their testimony, in their absence. -- Mary Schweitzer
Here I sit, now requiring a reclining chair while using my computer. I also can no longer use the computer mouse, at least nowhere near what I would need to stay in touch via email the way I have managed to do in the past. And, since my pain level has increased so dramatically, and concurrently I have been forced to discontinue most pain medication due to side effects, I am not able to type any longer either. This message is being slowly dictated to a program that interprets speech as written text. The speed at which I am able to dictate is so slow that I have had to drop most of my online correspondence.
So now, not only have I lost my profession, lost my earning potential, lost most of my friends, become nearly bedridden, gone through most of the medications used to treat CFS symptoms and found no relief, but now I am also suffering from chronic, severe, untreated pain. I would state that I have nothing left to lose, but I till have three cats and a sister and I fear bringing them to fate's notice.
My journey through the long term disability insurance maze was easier than that of most people with CFS, which I attribute to the instructions and original contract between my company and the insurer, CIGNA. However I know that my benefits with them and with Social Security are subject to review at any time, and I have no idea how I will mount a defense given my now weaker state and fewer medical resources.
I am nearing the point where I will require daily help if I am to survive. But CFS does not qualify me for home help, so I have to pay for whatever help I can find out of my own very limited funds. Has the committee considered reclassifying CFS (the diagnostic code) to indicate that home help is appropriate? If not, will they find a way to do this, please.
In the push to find a diagnostic marker or test for people who are now being diagnosed with CFS (new patients), please don't forget those of us who have been sick for many years and whose health is getting worse.
Mary, I would like for you to include these remarks in your written submission to the committee tomorrow. I would like to have gone myself, but travel is nearly impossible. I want everyone to know that people like me want to contribute more to this world before we leave it, but instead we feel like sponges, soaking up resources. If only the committee will push like Hell to find people who will do the work we can not do anymore, the research we need to find us treatments, cures, accommodations, whatever it takes to make us productive again... then maybe we won't feel like sponges anymore.
Newnan, GA (formerly Maryland)
To the CFSCC, From Judith Wisdom of Philadelphia, PA:
I would like to raise the following issues:
1. Setting up on the model (I don't have it clearly in mind) of what exists for AIDS and cancer a centralized agency that would collect, systematize, publicize (a bi-monthly publication possibly) all published AND ongoing research worldwide that bears on CFIDS. Related to this could be some fund-attracting/registering functions; i.e., listing and attracting of research grant moneys for various kinds of research into CFIDS. Also, what would be very stimulating, would be to have in the publication one article that would allow for a thought piece, where an expert would reflect on several research projects and think out loud about their implications for one another, or a piece thinking out loud about unanswered questions. This publication would be available to doctors and to patients as a government publication through the GPO much like I THINK (not sure) the Morbidity and Mortality Index is. The whole purpose of this would be not just education and research support and "fire" but reducing the seeming anarchy and /or chaos many of us correctly feel about what's going on in the various fiefdoms.
2. Attention to detailed epidemiological research in an attempt to follow the course and pattern of cases.
3. The issue of care and social support. We've got an illness for which no cure has found. An illness that deprives a significant subset of working. An illness that hits a large number of single family income households, or turns two-family income households into one-family income households in a society where SSDI was NEVER from its outset considered to be substitute for income (i.e., one's support when disabled was believed to be augmented by it, whereas so many now, in current societal arrangements, use it for their SOLE source of income); in a society where there have been huge cutbacks in social welfare and health coverage.
This imposes impossible constraints on not just PWCs but on all those with long-term chronic work-disabling illness. And the government is doing nothing.
One tiny way, besides epidemiological studies including these people, would be to ask for some cases of this sort to be represented at the next CFSCC meeting, as my earlier post suggested, by their conducting an interview of a few of us either live (preferably) or beforehand, preferably with visual capabilities to get some palpable sense of what it is like to be a PWC that they will never see at their meetings in DC.
From: Condy Eckerle
For the CFSCC to have any credibilty with patients, the following issues must be addressed;
Because the issue of bias toward psychologizing the symptoms of CFS is a very well recognized aspect of the medical profession's response to CFS the CFSCC should be calling for an independent council of doctors or government officials to look into and comment on whether or not this bias is present in the CDC and NIH, and if this bias is present , to determine if it is inhibiting medical research into CFS, skewing the information made available to the public by those organizations or preventing the awarding of research grants to doctors who do not share in this bias.
Failure to address this issue is to fail to address one of the chief concerns of PWCs.
We would also like an explanation of why CFS research is being done by infectious disease doctors who say that the illness is not infectious. If this is the case then why are these doctors continuing to control CFS research?
If CFS is- or might be infectious- that is - if we don't know if it is or not- shouldn't this be made clearer to PWC's, their families and to the public?
Return to Text, CFSCC Testimony October 22, 1997
Go to Appendix A: How Bad is Bad?
Go to Appendix B: The Need for Diagnostic Criteria for before "The Crash"
Go to Appendix C: Disability Struggles
Go to the CFIDS/M.E. Information Page
Mary Schweitzer's Essays on CFIDS/M.E.
Mary Schweitzer's Testimony to CFSAC and CFSCC