P.A.N.D.O.R.A. SPECIAL MESSAGE FOR ASSISTANCE & YOUR VOTE
by Lydia Neilson
CAST YOUR VOTE FOR PATIENT
ALLLIANCE..(P.A.N.D.O.R.A.) AND FORTHE
ORGANIZATIONS THAT EMBRACE OUR CAUSE ON CHASE COMMUNITY GIVING
<http://www.facebook.com/notes/pandora-inc-patient-alliance-for-neuroendoc...>Share
Yesterday at 6:40pm
Dear Friends,
We ask you to read this entire NOTE. If you have
difficult reading at once. Take a break and then come back again. Here we go.
From the beginning of our participation on CHASE
Community Giving, we have asked for your VOTE for
PATIENT ALLIANCE...(DBA P.A.N.D.O.R.A.-NEI
CENTER) PANDORA at
<http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient...>http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient...
as well as to vote for the other organizations
that embrace the illnesses PATIENT
ALLIANCE...(DBA P.A.N.D.O.R.A.-NEI CENTER)
embraces, and do meet the rules of the contest.
These organizations are 501 c 3 (charitable
organizations) and Guide Star is the main
provider of this information to the Sponsor of
the Contest: Chase Community Giving.
Please read the rules below. Note that the top 5
will get most of the donation grant from Chase.
But the remaining 195 will also get $20,000.00.
As it is now, P.A.N.D.O.R.A. is on the top 50 and
therefore we currently qualify for $20K. Yes, we
will get $20, 000.00 if we at least maintain our ranking as it is now!
However, t is important to keep voting for
PANDORA, because the contest still has 2 weeks to
go, and we don't want to fall behind. So please
ask others to vote until the contest ends on July 13, 2010.
In addition, and PLEASE do not forget to use the
other 19 votes for the other organizations we and
other groups have compiled for you below. If you
are aware of any organization that should be on
the list, please send us an e-mail or post the
name/charity page on our FACEBOOK page so we can
include here. This note can be edited daily.
Remember: Support PANDORA and support your local
city or state organization and vote today. If you
are having problems voting, post a blurb on the
Chase Community Giving Page on Facebook. They may
not respond but they will look into the problems.
Every Day we are posting our ranking (position)
on the Leaderboard. As of today June 26, 2010 we
have 531 votes holding number 51. Great News
indeed as we already qualify for the $20K.
TUTORIAL VIDEO & Quick Tips to assist you in voting and on spreading the word:
TUTORIAL Video created by Frank Op DeBeeck from Aboutmecfs.org.
Go to <http://www.chasegiving.tk/>http://www.chasegiving.tk/
TIP 1: On the page of the charity after you Vote,
click on the share button and invite at least 10
friends. It has be to be done individually. Every vote counts!
TIP 2: You vote 5 times: You get a gift vote to
send to a friend. That friend will be able to use
that "gift vote" to vote for the second time for
his/her favorite charity. One can only vote TWICE
for the same favorite charity. (Ask your friend
to vote for PANDORA again, so we can maintain our leadership in place.)
TIP 3: You vote 20 times: You get a gift vote to
send to the same friend. That same friend will
then be able to use the "gift vote" to vote for
the second time for his/his next favorite
charity. Again (Ask your friend to vote for
PANDORA again, so we can maintain our leadership in place.)
TIP 4: You receive a gift vote. You then vote for
the second time for your favorite charity.
TIP 5: Every time you receive a gift vote you can
then vote for another charity. If you already
voted for PANDORA twice, we ask you then to vote
for one of the other organizations that embraces
the illnesses in our overall cause. The
organization within our overall community that is
also ranking high on the leaderboard is the New
Jersey CFS Association at
<http://apps.facebook.com/chasecommunitygiving/charities/223367433-new-jer...>http://apps.facebook.com/chasecommunitygiving/charities/223367433-new-jer...
USE YOUR 2O VOTES TODAY! Ask for Gift Votes from
you Friends so you can vote twice.
Let's get behind OUR organizations! Often I get
emails from individuals who cannot donate because
of their financial situation. They wish they
could do more. Well, Here is a wonderful
opportunity to donate without hurting your pocket
book. What a gift this opportunity from Chase
Community Giving is! Don't delay voting today.
The contest ends on July 13, 2010. We don't have
much time but I know we can do it. We must rally
everyone behind this effort. The goal here is to
ensure all of the organizations that embrace
neuroendocrineimmune disorders can have a shot at
the $20, 000.00 level for their local projects,
which means they have to be ranked in the top 200 charities.
Even if we don't get these other organizations
there too, we can still ensure the organizations
that advocate for our overall cause, get votes so
they can then qualify for the second choice - to
be chosen by the Chase Community Giving Advisory
Board, as you will read on the rules below.
SUGGESTED MUST VOTE LIST - Please note that the
names listed are written as you should search for
the organizations on the Search page of Chase Community Giving.
Search us under: PATIENT ALLIANCE
NEUROENDOCRINEIMMUNE...(not DBA P.A.N.D.O.R.A.- NEI CENTER(tm)).
<http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient...>http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient...
Please note that PANDORA is already on the top 50
charities list on the leaderboard, so we already
qualify for the $20K, but we need more votes to
maintain this ranking or better yet to climb up
to the top 5. We also would like other
organizations within our overall Cause Community
to have the same opportunity. So vote for PANDORA
and vote for the other organizations too below:
The Lanford Foundation- Lifelyme Inc.
<http://apps.facebook.com/chasecommunitygiving/charities/223930161-the-lan...>http://apps.facebook.com/chasecommunitygiving/charities/223930161-the-lan...
New Jersey CFSA
<http://apps.facebook.com/chasecommunitygiving/charities/223367433-new-jer...>http://apps.facebook.com/chasecommunitygiving/charities/223367433-new-jer...
IACFS-ME formerly AACFS
<http://apps.facebook.com/chasecommunitygiving/charities/731416680-america...>http://apps.facebook.com/chasecommunitygiving/charities/731416680-america...
Massachussets CFSA
<http://apps.facebook.com/chasecommunitygiving/charities/61354867-connecti...>http://apps.facebook.com/chasecommunitygiving/charities/61354867-connecti...
Wisconsin CFS-ME Association
<http://apps.facebook.com/chasecommunitygiving/charities/391614649-wiscons...>http://apps.facebook.com/chasecommunitygiving/charities/391614649-wiscons...
Dallas CFS Support Group
<http://apps.facebook.com/chasecommunitygiving/charities/752803651-cfsfm-s...>http://apps.facebook.com/chasecommunitygiving/charities/752803651-cfsfm-s...
CFSKnowledgecenter.com
<http://apps.facebook.com/chasecommunitygiving/charities/223930161-the-lan...>http://apps.facebook.com/chasecommunitygiving/charities/223930161-the-lan...
Connecticut Chronic Fatigue and Immune Dysfunction Syndrome Association, Inc.
<http://apps.facebook.com/chasecommunitygiving/charities/61354867-connecti...>http://apps.facebook.com/chasecommunitygiving/charities/61354867-connecti...
Blackhills Chronic Fatigue CFS and Fibromyalgia Syndrome Supt GP
<http://apps.facebook.com/chasecommunitygiving/charities/411886796-blackhi...>http://apps.facebook.com/chasecommunitygiving/charities/411886796-blackhi...
Manasota CFS-CFIDS Support Groups Inc.
<http://apps.facebook.com/chasecommunitygiving/charities/650369463-manasot...>http://apps.facebook.com/chasecommunitygiving/charities/650369463-manasot...
National Fibromyalgia Research Association, Inc.
<http://apps.facebook.com/chasecommunitygiving/charities/931113831-nationa...>http://apps.facebook.com/chasecommunitygiving/charities/931113831-nationa...
Greater Tallahasee Fibromyalgia Chronic Fatigue Syndrome
<http://apps.facebook.com/chasecommunitygiving/charities/593645995-greater...>http://apps.facebook.com/chasecommunitygiving/charities/593645995-greater...
Tacoma Gig Harbor CFIDS and Fibromyalgia support group
<http://apps.facebook.com/chasecommunitygiving/charities/911767474-tacoma-...>http://apps.facebook.com/chasecommunitygiving/charities/911767474-tacoma-...
CFIDS Emergency Relief Services, Inc.
<http://apps.facebook.com/chasecommunitygiving/charities/631155572-cfids-e...>http://apps.facebook.com/chasecommunitygiving/charities/631155572-cfids-e...
Central Virginia Chronic Fatigue Syndrome Fibromyalgia Association, Inc
<http://apps.facebook.com/chasecommunitygiving/charities/541882643-central...>http://apps.facebook.com/chasecommunitygiving/charities/541882643-central...
Chronic Fatigue Syndrome Fibromyalgia Org of Georgia, Inc.
<http://apps.facebook.com/chasecommunitygiving/charities/342032081-chronic...>http://apps.facebook.com/chasecommunitygiving/charities/342032081-chronic...
How the LEADERBOARD tally works:
"Stop by to find out which charities are on top,
but dont stop there. You can keep tabs on
charities you and your friends voted for, take a
look at the top charities in your area, and even
see which charities are climbing the fastest.
Since the Leaderboard is updated twice daily, two
or more charities may have the same number of
votes at any given time. When this happens, we
look at voting time stamps and rank charities
according to when votes were cast. In this case,
the earlier you vote, the higher your favorite
charity will rank if several charities have the
same vote count. For more information, see our FAQs.
Here is also another pertinent excerpt of the
rules of the contest that we believe will
motivate you to vote NOW: Don't delay your Vote!
"...Sponsor will donate $250,000 to the Charity
receiving the most votes, $100,000 to each of the
four runner-up Charities, and $20,000 to each of
the remaining top 195 Charities receiving the
most votes at the end of the Program; provided
each winning Charity meets all eligibility
requirements and standards. Those Charities will
be announced on the Chase Community Giving Page,
after an attempt has been made to notify them via
private e-mail or other like method, as well as
through the Chase Community Giving application on or about 07/13/10.
(Please note that PANDORA is already on the top
50 charities list on the leaderboard, so we
already qualify for the $20K, but we would like
other organizations within our overall Cause
Community to have the same opportunity. So vote
for PANDORA and vote for the other organizations
too. But it gets better...here is another reason
for you to vote for PANDORA and for the other
organizations too...keep reading below!)
"Advisory Board Selection: Sponsor will also
donate combined total of $500,000 to the eligible
Charity or Charities who have received at least
one vote and are chosen by an advisory board
designated by Sponsor (the "Advisory Board"). The
chosen Charity (or Charities) will be announced
on the Chase Community Giving Page, after first
being notified via private e-mail or other like
method, as well as through the Chase Community
Giving application once those selections have been made.
In the event of a tie, the Charities will be
chosen based on who received the most votes first
according to the timestamp within Sponsor's
records. Sponsor may award additional donations as it deems appropriate.
"Each winning Charity may be required to
substantiate it meets the eligibility and other
requirements of these Official Rules. Those
requirements include, but are not limited to,
proof of 501(c)(3) status as well as operating
expense. Charities will also be required to
complete and return the required grant
application and grant agreement and, except where
prohibited, a Publicity Release. If required,
documents must be returned within ten (10) days
of receipt or the Charity may be disqualified.
The Executive Director of each Charity must be
available to speak with Sponsor within five (5)
days of Sponsor's request. No transfer or
assignment of the donation is permitted.
Charities should receive all, or a portion (as
described below), of their donations 6-8 weeks
after Sponsor determines that eligibility
requirements and standards have been met and
Sponsor has received all required documentation.
Sponsor may distribute donations in increments,
subject to receipt of consulting services, or
pursuant to an implementation plan mutually
agreed upon between Sponsor and the winning
Charity. Federal, State and Local taxes and fees,
if any, are the winning Charity's sole responsibility."
(This means that even if a charity does not win
the popularity vote that charity if it has at
least one vote can then be on the competition to
receive a grant from Chase Community Giving
through their Advisory Board. This is really an awesome opportunity!)
"Eligibility
The Program is open to all Participants who allow
"Access" and "Like" the Chase Community Giving
application on the Facebook platform and abide by
these Official Rules. In order to be eligible to
receive a donation through the Program, a Charity must:
be recognized as a 501(c)(3) public charity in
the Guidestar database as of March 30, 2010;
be available for selection through the Chase
Community Giving application as of 06/02/10;
be 501(c)(3) public charities and not be subject to any U.S. sanctions;
have annual operating expenses of $1,000,000 or
less based on most recent IRS filings or
otherwise substantiated through audited financial statements;
be listed in IRS Publication 78;
not be designated by the IRS as a private foundation;
not have been awarded any grants through a
previous Chase Community Giving program; and
use all of the grant received from the program
to promote or benefit one or more of the
following categories: primary or secondary
education, youth development, healthcare,
housing, community development, the environment,
combating hunger, arts and culture, human services, and animal welfare.
NOTE: A Charity's failure to maintain its
501(c)(3) status may, in Sponsor's sole and
absolute discretion, disqualify a Charity from
the Program or from receiving any or all of a
donation awarded through the Program.
Charities may also be deemed ineligible if in
Sponsor's sole and absolute discretion, a
charity, its management or affiliated organizations, among other things:
is, or has been, under any investigation for
fraud, financial misconduct or other criminal activity;
promotes or suggests, directly or indirectly,
the use of firearms/weapons, any illegal drugs,
prostitution or pornography, violence, or the underage use of alcohol;
suggests or encourages, directly or indirectly,
the taking up of arms against any person,
government or entity or otherwise challenge or
seek to overthrow any government;
discriminates against, disparages or denigrates
any race, age, gender, disability, sexual
orientation, ethnicity, religion, political
orientation, national origin, citizenship,
ancestry, marital status, veteran status or
mental or physical disability or condition;
disparages, denigrates (in writing or
otherwise), or acts by means of adversarial or
confrontational tactics to impact a product,
service, person, industry, or organization
including, but not limited to, Sponsor or participants in the Program;
whose primary purpose is to advance a religious
denomination, expand membership or encourage conversion;
supports or promotes the pro-life or pro-choice movements;
spends a significant amount of time advancing a
particular political party or candidate or
supporting lobbying for any particular party,
candidate and/or cause, or expanding or
encouraging a membership or a particular
political party, candidate or lobbying effort;
participates in the Program, or otherwise
conducts itself, in an unsportsmanlike or inappropriate manner;
is a post secondary educational institution or
an associated alumni association, fraternity or sorority; or
violates the Official Rules.
Any organization determined to be ineligible at
any time will be disqualified. Sponsor retains
the right at its sole discretion to determine
eligibility and reserves the right to disqualify
any Charity at any time for any reason
whatsoever. Additionally, Sponsor reserves the
right to eliminate a Participant's involvement
and all votes cast through the Program if
Sponsor, in its sole discretion, determines
Participant is not abiding by these Official
Rules or otherwise acting in an unsportsmanlike
or inappropriate manner. Decisions by Sponsor
will be binding and conclusive on all matters."
Vote today!
ONE VOTE -ONE VOICE, ONE COMMUNITY, ONE CAUSE(TM)
In Good Health and in Beauty,
Marly C. Silverman
Founder, P.A.N.D.O.R.A.
Co-Founder, NEI CENTER(tm) - www.neicenter.com
Lydia E. Neilson, M.S.M., Founder
Chief Executive Officer
National ME/FM Action Network
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. (613) 829-6667 Fax (613) 829-8518
E-mail: ag922(a)ncf.ca
Web: http://www.mefmaction.net
13 years, 10 months
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ANNOUNCEMENT: NIH & FDA CONFIRM XMRV FINDINGS
by Lydia Neilson
Original Press Release from the Netherlands: FDA and NIH confirm
'XMRV findings'
<http://www.mmdnewswire.com/component/option,com_mailto/link,aHR0cDovL3d3d...>
E-mail <http://www.mmdnewswire.com/xmrv-9040/print.html>| Print |
<http://www.mmdnewswire.com/pdf-9040/xmrv.pdf>PDF
Gendringen, NL (MMD Newswire) June 22, 2010 -- The FDA and the NIH
have independently confirmed the XMRV findings as published in
Science, October last. This confirmation was issued by Dr. Harvey
Alter of the NIH during a closed workshop on blood transfusion held
on May 26-27 in Zagreb. Two journalists from the Dutch magazine for
health professionals, ORTHO, who have been working on XMRV stories
for several months, were able to obtain a copy of the Alter lecture.
In the October 8, 2009 issue of Science Express, the
Lombardi-Mikovits group at the Whittemore Peterson Institute (WPI),
the Cleveland Clinic and the National Cancer Institute (NCI) reported
that 67% of 101 chronic fatigue syndrome (CFS) patients tested
positive for infection with xenotropic murine retrovirus (XMRV). Only
3.7% of 218 healthy subjects tested were positive for this
gammaretrovirus. Since that time, a number of research groups have
proved unable to independently confirm these findings.
On Friday last, the AABB released an Association Bulletin
recommending that its member blood collectors actively discourage
potential donors who have been diagnosed with CFS from donating blood
or blood components. This interim measure was proposed by the AABB
Interorganizational Task Force on XMRV. This Task Force includes
representatives from several government agencies, including the
Center for Disease Control and Prevention (CDC), the Food and Drug
Administration (FDA) and the National Institutes of Health (NIH).
The fact that the measure was introduced suggests the presence of
information not yet published. The ORTHO journalists were able to
obtain a pdf document of the lecture given by Harvey Alter at the
IPFA/PEI 17th Workshop on 'Surveillance and screening of Blood Borne
Pathogens' in Zagreb. The International Plasma Fractionation
Association (IPFA) represents the not-for-profit organizations around
the world involved in plasma fractionation. The IPFA is based in
Amsterdam, the Netherlands.
The highly-experienced Dr. Harvey Alter is Clinical Studies Chief at
the Infectious Diseases and Immunogenetics Section of the Department
of Transfusion Medicine at the NIH Clinical Center in Bethesda. "The
data in the Lombardi, et al Science manuscript are extremely strong
and likely true, despite the controversy", was one comment on the
XMRV findings reported by Alter in Zagreb. "Although blood
transmission to humans has not been proved, it is probable. The
association with CFS is very strong, but causality not proved. XMRV
and related MLVs are in the donor supply with an early prevalence
estimate of 3% 7%. We (FDA & NIH) have independently confirmed the
Lombardi group findings."
Lydia E. Neilson, M.S.M., Founder
Chief Executive Officer
National ME/FM Action Network
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. (613) 829-6667 Fax (613) 829-8518
E-mail: ag922(a)ncf.ca
Web: http://www.mefmaction.net
13 years, 10 months
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Fwd: Re: CAST YOUR VOTE FOR PANDORA ON CHASE COMMUNITY GIVING PROJECT
by Lydia Neilson
Hello Everyone:
P.A.N.D.O.R.A. needs our help. Please find a
message below from Marly Silverman, the Founder of Pandora.
Lydia
>>Lydia E. Neilson, M.S.M., Founder
>>Chief Executive Officer
>>National ME/FM Action Network
>>512 - 33 Banner Road
>>Nepean, ON K2H 8V7 Canada
>>Tel. (613) 829-6667 Fax (613) 829-8518
>>E-mail: ag922(a)ncf.ca
>>Web: http://www.mefmaction.net
>>P.A.N.D.O.R.A.- Patient Alliance for
>>Neuroendocrineimmune Disorders Organization for
>>Research & Advocacy, Inc. is among the top 200
>>non-profit organizations running at the Chase
>>Community Giving project for the top prize of
>>$250,000. Other prize winnings are: $100,000 &
>>$25,000. As PANDORA remains in the top 100
>>their chances to win any of the prizes are strong.
>>
>>As of this morning,
>><http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient...>they
>>have 82 votes, but they need to gather much
>>more to remain the competition. If you are on
>>Facebook and you have any of the illnesses that
>>P.A.N.D.O.R.A. embraces
>><http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient...>cast
>>your vote today for PANDORA as well as for the
>>other organization in the U.S. that support the
>>neuroendocrineimmune disorders overall cause:
>>CFS-ME, FM, chronic Lyme disease, MCS, and Gulf War Illness.
>>Here is their
>><http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient...>direct
>>link to the Vote for PANDORA page on Chase Community Giving
>>Here is the link that you can cut and paste on
>>your browser :
>><http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient...>http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient...
>>
>>To get others involved and to make easier on
>>you, Frank Op de Beeck, from Phoenix Rising.com
>>has <http://www.chasegiving.tk/Tl>created a
>>page link supporting P.A.N.D.O.R.A.'s efforts
>>in the Chase Community Giving competition.
>>Here is the direct link that you can cut and
>>past on your
>>browser: <http://www.chasegiving.tk/Tl>http://www.chasegiving.tk/Tl
>>On this page Frank provides step by step
>>instruction. Please note that whether you are
>>new to Facebook or you are already on Facebook,
>>you need to connect to the Chase Community
>>Giving application provided on Facebook to
>>participate in the voting process. Frank has
>>also included a teaching video he created
>>already posted on youtube.com that teaches you
>>how to go through the steps. It is not complicated at all!
>>
>>Note: Each voter has access to 20 votes, please
>>use them including the gift votes that you can
>>forward to a friend to vote again. Vote for the
>>organizations that support our community's overall cause.
>><http://apps.facebook.com/chasecommunitygiving/rules>Click
>>here to read the rules for the contest or cut
>>and past this link:
>><http://apps.facebook.com/chasecommunitygiving/rules>http://apps.facebook.com/chasecommunitygiving/rules
>>
>>Thank you again for your support of
>>P.A.N.D.O.R.A. and the <http://neicenter.com/>NEI Center
>>
>>In Good Health and In Beauty,
>>Marly "Marla" C. Silverman
>>Founder
>>P.A.N.D.O.R.A. - Patient Alliance for
>>Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.
>>255 Alhambra Circle, Suite 715, Coral Gables,
>>Florida 33134 - Volunteer Help Line: 954-783-6771
>><http://www.pandoranet.info/>www.pandoranet.info
>>Built on Hope - Strong on Advocacy - Finding a Cure through Research.
>>
>>Support the <http://www.neicenter.com/>NeuroEndocrineImmune (NEI) Center
>>
>>[]
>>
>>
>>
>>Together we can make a difference!
>>
>>
>>
>>
>>
>>
>>
>>
13 years, 10 months
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MAY12 - ANNOUNCEMENT - THE HISTORY & BIRTH OF THE ME/CFS & FMS CANADIAN CLINICAL DEFINITIONS
by Lydia Neilson
>Dear Friends:
>I had to do a search through all our newsletters since its
>founding in 1993 and as while reminiscing decided to make a history
>of how the definitions were established and the struggles we faced
>before the final success.
>
>Thought you might like to see how all our planning paid off. If you
>would like that information, please send me an email and I will send
>you the attachment.
>Lydia
Lydia E. Neilson, M.S.M., Founder
Chief Executive Officer
National ME/FM Action Network
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. (613) 829-6667 Fax (613) 829-8518
E-mail: ag922(a)ncf.ca
Web: http://www.mefmaction.net
13 years, 10 months
- 1
- 0
you must be well by now
by Lydia Neilson
Dear Friends:
A person who I have been communicating with suggested I forward my
reply to her to others in the support network. As all people are
treated confidentially, I will not name the individual but I thought
I would do what she suggests and pass on my response to her, in the
hope it will help someone going through something similar.
Lydia
Lydia E. Neilson, M.S.M., Founder
Chief Executive Officer
National ME/FM Action Network
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. (613) 829-6667 Fax (613) 829-8518
E-mail: ag922(a)ncf.ca
Web: http://www.mefmaction.net
Dear Friend:
First of all, I want you to understand that your reaction to exercise
is normal for people who have ME/CFS. Until you are in the recovery
mode, exercising will set you back. Even in recovery mode, you must
be very careful. If you want to do any kind of exercise, keep it to
careful stretches so that your body stays limber and just do plain
walking. If it means only walking in your house, then do just
that. I am sending you what happens to people who have ME/CFS and
they exercise before they are ready to do so:
RESPONSE TO EXERCISE
Healthy People:
A sense of wellbeing
It invigorates them and acts as an anti-depressant effect
Resting heart rate is normal
Heart rate is at maximum workload and elevated
They get a maximum oxygen uptake and elevated
Age-predicted target heart rate can be achieved
Heart functioning is increased
Cerebral blood flow increased
Cerebral oxygen increased
Body temperature increased
Respiration increased
Cognitive processing is normal or more alert
Recovery period is short
Oxygen delivery to the muscles is increased
Gait kinematics is normal
ME/CFS People
Feeling of malaise, fatigue and worsening of symptoms
Resting heart rate is elevated
Reduced heart rate
Oxygen uptake approximately half of sedentary controls
Age-predicted target heart rate cannot be achieved
Heart functioning is sub-optimal level
Cerebral blood flow is decreased
Cerebral oxygen is decreased
Body temperature is decreased
Respiration, breathing ire=regularies occur i.e. shortness of breath
and irregular breathing
Cognitive processing is impaired
Recovery period at least 24 hours but can last days or even weeks
Oxygen delivery to the heart is impaired
Gait abnormalities
I hope that helps you to realize that what is happening to you is for
a reason and why you feel worse after exercise.
Your mom's reaction to your illness is lack of understanding what a
chronic illness is. She is not any different from most people who
have not been exposed to chronic illness before. It is hard to
believe how anyone can be ill for so long without getting better. I
doubt very much that at one time you would think your illness could
go on for so long.
When an illness is considered chronic, it means that it goes on for a
long time and can wax and wane. Some days are better than
others. That is with all chronic illness and ME/CFS is no
exception. You have to get over the fact that you must have done
something wrong because you are not doing the right things and if you
did you would be better by now. To get better you need treatment
that is geared towards the illness. In our case, the treatment
treats some of the symptoms. The only part you can influence is the
stress and pace as much as you can. It is important that you do not
go to the point of exhaustion and always stop much before you get
there. That accomplishes two things. One, if you stop before you
reach the breaking point, you make the decision to stop instead of
the illness stopping you. In addition, your recovery rate is better
if you rest before you exhaust yourself.
How other people react to your illness is something you cannot
control, just like you can't control what people think of you. You
may have changed because of illness as to what you can do but you are
not the illness and are still you. You need not be ashamed because
others feel you have been ill long enough and it is time to shape
up. It is hard for anyone to believe that in this day and age there
is not something that a doctor can give you that will make you
recover. We think that once we are diagnosed, everything will be
fine and it is just a matter of time before we are as good as
new. That is not reality.
From this day forward, hold your head up high and be yourself. Stop
indirectly apologizing that you are not the way people think you
should be. You are equal to everyone else and those who do not treat
you with respect and caring, and make you feel bad about yourself,
keep your distance form them. Go on with your life as best you can
and know that the National ME/FM Action Network will keep working for you.
Lydia E. Neilson, M.S.M., Founder
Chief Executive Officer
National ME/FM Action Network
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. (613) 829-6667 Fax (613) 829-8518
E-mail: ag922(a)ncf.ca
Web: http://www.mefmaction.net
13 years, 10 months
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