RE: [ME/CFS Centre] Digest for mecfscentre@googlegroups.com - 4 Messages in 1 Topic
Linda J. MacDonald
Oops sorry folks. Did realize the attachment would go “nowhere”. If anyone is curious, this is what it said. (AT the bottom of the petition there is a space to make a statement about why you signed the petition. This was mine.
Linda
“Why I signed the petition: http://www.change.org/petitions/minister-of-health-of-canada-fund-research-for-patients-with-myalgic-encephalomyelitis#
Minister of Health of Canada: Fund research for patients with myalgic encephalomyelitis
Why? 25+ years of ME/CFS and/or Lyme disease post infectious illness, the past 11 of which have been completely debilitating. Housebound, isolated, missing out on my life and burdening my ageing parents and family and friends. Heart breaking. And worst of all, not necessary!! I could return to the work force if I could get proper testing and treatment which is actually relevant to this illness. Canada needs proper science-based ME/CFS testing and treatments like other countries, and it needs the results to be integrated in such a way as to make the health care system able to anticipate and respond to patients with this illness in a way which is practical and constructive. This includes the home bound patients. Health Canada: Make this happen in my lifetime, the sooner the better. Diagnostic blood testing by PCR chip is possible, which would cost less than 100 dollars per patient and save 5 to 10 years of ambiguous diagnosis and uncertainty and lack of disability status for the typical Canadian ME patient. This has already been proposed by pioneer CFIDS immunologist Dr Daniel Peterson (ref: his talk to doctors in Sweden, fall 2006). It could be one of many tools offered and developed further. Focused gov't sponsored fatigue and ME/CFS research is being done by the gov't of Japan, the US NIH, etc. Why not us? If the gov't and the medical/health authorities here in Canada would treat this illness seriously, it could actually enable enough currently ill Canadians that it would relieve our workforce problems and take a serious load off of healthcare systems and disability programs. Even if a cure is not yet possible, and we remain ill and unproductive, we deserve the same rights and regard as other ill and disabled citizens, and that is currently not happening. The time in Canadian medical history is over-ripe for a commitment to ME/CFS. ME scientific findings identified internationally (but not being followed up in Canada clinically) include cardiovascular and immune abnormalities. The CIHR is encouraging personalized medicine research models and ME lends itself with its high variability in clinical presentation. This illness is a perfect candidate for a personalized medicine model of study, since there is specific gene dysregulation and there are identified subtypes. (Kerr et al 2005). There is really a lot known about this illness but there is no one to organize the health care system and medical standards to incorporate this knowledge to date. AS a result, we still have, after decades of disordered approach, no standard testing, no sure treatments and no cure. We have the talent here in Canada to make that happen. Enable them: fund and found a 13th CIHR institute dedicated to ME/CFS and related conditions. How about the Institute for Complex Chronic Illnesses and Epigenetic Studies?
Whatever you call it, a rose by any name is just as sweet.
Linda J. MacDonald
Sherwood Park, AB
March 6, 2012”
From:
mecfs...@googlegroups.com [mailto:mecfs...@googlegroups.com]
Sent: Wednesday, March 07, 2012
2:49 AM
To: Digest Recipients
Subject: [ME/CFS Centre] Digest
for mecfs...@googlegroups.com - 4 Messages in 1 Topic
Group: http://groups.google.com/group/mecfscentre/topics
§ Important petition - please print my letter on why i signed [4 Updates]
"Linda
J. MacDonald" <ljm...@telusplanet.net> Mar 06
03:00PM -0700
Hello Kristine
I filled out the petition. I added a letter about why I signed. Here it is
attached. I would like very much if the ME Society newsletter would publish
it to encourage others to sign, and to encourage others period. It's a bit
rough around the edges but I think it should work the way it is.
Thanks,
Linda MacDonald (member)
_____
From: Kristine Miles [mailto:kristin...@mesocietyedmonton.org]
Sent: Tuesday, February 21, 2012 6:38 PM
To: undisclosed-recipients:
Subject: Important petition
Hello everyone;
Here is a petition you might be interested to read.
Kristine
ME Society of Edmonton
Resource Centre Assistant
<http://www.change.org/petitions/minister-of-health-of-canada-fund-research-
for-patients-with-myalgic-encephalomyelitis>
http://www.change.org/petitions/minister-of-health-of-canada-fund-research-f
or-patients-with-myalgic-encephalomyelitis
Karen
Lambert <lemonfo...@yahoo.com> Mar 06 02:25PM
-0800
Dear ME Society,
I have Chronic Fatigue Immune Dysfunction Syndrome (CFS/CFIDS/ME) and HIV-NEGATIVE
AIDS, idiopathic CD lymphocytopenia. With these two clinical diagnoses, I
believe that makes me living proof that the AIDS-like CFS/ME is transmissible,
something that the medical establishment seems unable to admit or to
acknowledge. I also believe it makes me living proof that CFS and non-HIV AIDS
are basically the same mysterious immune disorder.
Three years ago, after a heterosexual sexual encounter, I became seriously ill
with what looks like the natural disease progression of AIDS. After an "acute
infection" and a "period of asymptomatic health", I have fallen
extremely ill to an unrelenting, progressively-worsening AIDS-like demise. I
can pinpoint exactly when I was infected with my "chronic viral syndrome
of unknown etiology" and because the "acute infection" stage was
so distinguishable, I can also pinpoint exactly when my undiagnosed pathogen
left my body and infected yet another host.
Whatever I am currently dealing with, it strongly resembles classic textbook
HIV/AIDS disease. But, to add to my inquiry, I also clinically satisfy the
CDC's criteria for the diagnosis of CFIDS.
Increasingly, I have become concerned that my systemic diagnosis is caught up
in the treacherous politics of CFIDS and AIDS. Most people with CFS/ME do not
like to talk about the many symptoms and immune abnormalities that they share
with AIDS patients. I also suspect that most ailing patients would rather be
told that they have the very mysterious CFS than to be told that they have
AIDS.
I have a Master's degree. I am a director at my firm. I used to be a
triathlete. I have never used IV drugs. I have never traveled abroad. I can
count my sexual partners on two hands. Statistically speaking, I know that my
undiagnosed infectious and communicable disease is not rare...so, you tell me,
if they are not in the miscellaneous CFS/ME category, where are all these other
immunosuppressed people?
Anyone with CFIDS, who does not consider the possibility that CFS/ME will
eventually progress to a NON-HIV AIDS diagnosis, is very well trumping their
own ability to diagnosis the root cause of their illness.
Why isn't CFS/ME a reportable disease overseen by our public health department?
Why are ME and CFS (i.e., the same exact disorder) suspiciously categorized as
two separate illnesses on a worldwide level (i.e., by ICD codes)? Doesn't
anyone else but me, very clearly see, the catastrophic cover-up going on here?
Why are we not reading about Non-HIV AIDS cases (and/or the AIDS-like nature of
CFIDS) on the front pages of every newspaper in the world? And if CFS/ME is
Non-HIV AIDS, then, depending on who you believe, there are anywhere between
500,000 - 14,000,000 Americans out there with a transmissible illness. If that
is what it truly is, our new form of AIDS dwarfs the ‘original’ AIDS epidemic
---> TENFOLD.
I want honest answers for myself, for everyone who is suffering from this
hideous illness, and especially for those who remain uninfected by my
undiagnosed infectious and communicable disease.
As worrisome as my health is to me, I am extremely troubled by the strong
likelihood that more people are being infected every minute that Non-HIV AIDS
cases (like mine) are allowed to go undetected -- especially if it turns out
that AIDS and CFIDS/ME are basically the same disorder.
You can label my AIDS-like illness whatever you wish. I would even allow you to
call it infectious-CFS, even though it is utterly beyond my realm of
comprehension as to how the medical establishment can generically name an
entire disease paradigm based on just one (of my numerous) symptom(s).
Regardless of how politics may try to dissuade or delude you, all you need to
know is that my idiopathic immune dysfunction is infectious! It is contagious!
And it is spreading, unleashed, in the world's population!
I am not afraid to say that I have AIDS without HIV -- idiopathic CD
lymphocytopenia -- my second official clinical diagnosis. I am equally as
unafraid of saying the most obvious thing about CFS/ME: IT SURE DOES LOOK LIKE
AIDS TO ME.
We talk openly about preparing for an impending Avian Flu pandemic. Why not
talk about the HIV-NEGATIVE AIDS epidemic that already exists (and is
spreading) amongst us?
If it takes courage to think and to say the things that I do, I hope that there
will be a miraculous outbreak of bravery from coast-to-coast. I stopped
fighting for myself a long, long time ago. I fight for humanity.
I demand a CFS/HIV revolution. Vive La Revolución.
To learn more about non-HIV AIDS, and to see the *new* face of AIDS, please visit:
www.cfsstraighttalk.blogspot.com
Could I be you?
{Boston, MA,
USA © 2007}
Sophie
Ambrose <alias...@gmail.com> Mar 07 07:12AM +0800
I think it's pretty likely that "CFS" covers many different illneses.
It's
possible that some of them are communicable (including yours), but from
what I've read research has shown that on the whole CFS is not
communicable: friends/family/partners of people with CFS are not all that
much more likely to develop it, apart from a possible genetic tendency.
Not all CFS is like AIDS either. I've had CFS symptoms, to a greater or
lesser extent, for about ten years, and they are nothing like AIDS apart
from the fatigue. My immune system isn't too bad, if anything I get colds
etc less often! And my husband (who I've been with for those ten years) is
perfectly healthy. I know many other people who've had CFS for similar
periods who also don't have major immune issues, and whose partners are
totally fine.
Ricky
Buchanan <ri...@notdoneliving.net> Mar 07 12:05PM +1100
On 07/03/2012, at 9:25 AM, Karen Lambert wrote:
> I have Chronic Fatigue Immune Dysfunction Syndrome (CFS/CFIDS/ME) and
HIV-NEGATIVE AIDS, idiopathic CD lymphocytopenia. With these two clinical
diagnoses, I believe that makes me living proof that the AIDS-like CFS/ME is
transmissible, something that the medical establishment seems unable to admit
or to acknowledge. I also believe it makes me living proof that CFS and non-HIV
AIDS are basically the same mysterious immune disorder.
On the other hand, perhaps it just makes you "living proof" that
you're unlucky enough to have two separate unrelated illnesses at the same
time. Or your diagnosis may be wrong:
> Whatever I am currently dealing with, it strongly resembles classic
textbook HIV/AIDS disease. But, to add to my inquiry, I also clinically satisfy
the CDC's criteria for the diagnosis of CFIDS.
There are LOTS of different things that can generate CFS/ME symptoms, this is
why part of the criteria for CFS/ME/CFIDS/whatever always includes something to
the effect of "... and I don't have any other illnesses that could cause
these symptoms".
This is why my recent diagnosis of EDS, NMH/POTS, and mast cell disorder
technically means I don't have (and never had) ME/CFS. Because that triad *can*
cause all the CFS/ME symptoms that I have, I no longer fit the criteria for
CFS/ME either.
If you have measurable lymphocytopenia (which ME/CFS patients generally don't
have) then it seems likely that whatever caused that is causing your
"CFS/ME"-like symptoms too.
I'm really sorry you're stuck with whatever your disease really is - it sucks
hugely to be sick, whatever the cause! I don't think you're on the right track
here but I really hope that you get to the bottom of what's wrong with you.
Cheers,
Ricky
--
Ricky Buchanan - http://notdoneliving.net/
- @rickybuchanan
ATMac - http://atmac.org/ - Enabling Disabled
Apple Users
No Pity City - http://nopitycity.com/
- Disability gear that pulls no punches
Four Walls No Limits - http://fourwallsnolimits.net/
- For bedridden, housebound, and nearly housebound people
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