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DONATIONS
Contributions will help pay for sample and questionnaire mailings, blood collecting equipment, tubes, pizza, and conference expenses. No volunteer will be paid, including myself, and if there is any extra money kicking around, I will make sure it gets to the WPI or other worthy cause. The expensive stuff, meaning testing for XMRV, will be paid for through WPI or other organizations.
Please note: donations made to Lyndonville Research Group are not tax deductible.
Checks for tax deductible donations for Dr. Bell can be mailed to:
The Connecticut CFIDS and FM Association, Inc.
PO Box 3010
Milford, CT 06460
800-952-2037
860-659-3651
Checks must be made out to THEM.
In the "memo" should be written "Dr. Bell's Research".
Then they will mail us 100% of the donation.
NOVEMBER 2009:
Lyndonville Research Group Report
The LRG is back in business. A couple of phone calls, a pizza, and we are off again. I think that is the definition of a grass roots organization. We have four projects listed and have begun working on them. #1 is the lecture in Batavia on December 6 at 2 PM. I anticipate the talk will be about 1 hr to 1 ½ hours, then a break, then questions until 5 pm. The rental of the conference room is reasonable, and it holds 400 people. I think now is the time for communities to get active again, and I will be happy to present this talk to any community, providing a local group or individual pays airfare and lodging. It might be a good way to get support groups active again.
Project #2 is to begin organizing support for the New Jersey NEI center and their satellite branch in western New York. If I did not have to run the business, I would be happy to see patients with CFS in western New York.
Project #3 is important. It is now 25 years since the outbreak in Lyndonville, and we are tracking down the 60 kids who got ill at that time to find out what has happened to them. The 15 year follow up study was published (Bell D, Jordan K, Robinson M. Thirteen-year follow-up of children and adolescents with chronic fatigue syndrome. Pediatrics 2001;107:994-8) 20% of the kids in that study were still sick, but what is happening now? We'll see.
Project #4 is perhaps the most important of all. Did XMRV cause this cluster outbreak? If so the 60 kids should have demonstrable exposure to XMRV. Does this virus cause some to stay sick? If so, we should find viral DNA and viral proteins showing replication in those still sick, but not in those who got well.
Exciting times. In the past people have asked if they can make contributions and I have always declined. But we will now welcome any contributions to the LRG. These contributions will help pay for sample and questionnaire mailings, blood collecting equipment, tubes, pizza, and conference expenses. No volunteer will be paid, including myself, and if there is any extra money kicking around, I will make sure it gets to the WPI or other worthy cause. The expensive stuff, meaning testing for XMRV, will be paid for through WPI or other organizations. Contributions can be sent to myself at 12851 Roosevelt Highway, Lyndonville, NY 14098. The LRG is not tax exempt, but there is a local charity that is tax exempt and can be used. Questions may be directed to myself at lynnews@davidsbell.com.

OCTOBER 2009:
I would like to test the original Lyndonville kids for XMRV, and if any of you reading this became ill in the Lyndonville area around 1985, were 18 or under at the time, and want to be evaluated, please write to me at lynnews@davidsbell.com. Even if you are feeling great now.

Lyndonville
Research Group Concepts
Personnel:
1. Overall
project manager.
a. At
present this would be myself; should I become psychotic or ineffective,
someone else would take over.
2. General
gofers via the internet.
a.
A gofer would be under the direction of someone in category
4, and would find references and print them out or fax them.
Would need to have librarian-type skills.
3. Data
collection and distribution on the website.
a. This
would be a person with web and computer expertise who would tell
us how the data should be presented and what formats to use,
etc.
4. Persons
with biochemistry, molecular biology expertise.
a. Each
person would pursue a small, limited topic, collect data, assess
laboratory tests, collect references, and organize it into a
formatted flow sheet. The focus of each limited topic would
be its potential to cause fatigue or symptoms of ME/CFS.
5. Persons
with laboratory expertise.
a. These
persons would search for medical laboratories who can do a test
recommended by person #4, and outline the specimen requirements,
whether insurance covers it, patient conditions (fasting, etc.),
and normal values.
6. Fundraising/treasurer.
a. This
will be quite limited. No one gets paid for any work they do
on this project, it is purely a labor of love. Some papers
charge a fee for copies. We may need to buy a book here and
there. A conference if there is money. Possibly other
minor expenses.
7. Conference
organizer.
a. We
could consider a meeting every six months, similar to what is
done by MERGE in the UK if we have the money. In this "working" conference
we would invite speakers who could contribute to the ideas started
in the data collection and give us guidance on directions to
go. If we had money we would pay fares for all members of the
LRG and several days in the hotel for persons who are ill and
need the extra rest.
8. Non-medical
writers.
a.This
person(s) would write articles in areas of need for different
newsletters and magazines.
9. Medical
writers.
a. This
person(s) would work on writing medical papers with data collected
for different medical journals.
.
Example
Martha
Gesuntheit is a biochemist ill and disabled with ME/CFS for ten
years. She and I decide that she will pursue abnormalities
of thiamine which can cause fatigue. Martha hits the reference
libraries and pub med and finds six papers that potentially
are of interest. She gives this list to Bill Oxymoron who goes
after the full papers and either e-mails them or faxes them
to Martha, with a copy to me. Bill gets $22 from the treasurer,
Willie Bigbucks, for the expenses. Martha then studies these
papers and finds that an abnormality of erythrocyte transketolase
enzyme can cause a functional deficiency of thiamine despite
good intake and that this can be treated by very large doses
of thiamine. Emma Goodwillingly, the lab person, finds three
labs who can do this test that are reputable, and one of them
is covered by medical insurance. She sends this information
to Martha and myself. Martha makes a flow chart that looks
like this:
Defect: Abnormal erythrocyte
transketolase enzyme
Frequency of defect in population: 1
in 25,000,000,000 persons
Mechanism of symptoms: Relative
thiamine deficiency
Specific symptoms: 1) fatigue,
2) autonomic symptoms
Test: RBC transketolase
assay
Requirements: frozen sample
Normal values: 72 - 115
units
Cost: $225; covered by most
insurances
Treatment: High dose thiamine
References: blah sajaj ;ajl;asd
;jkhasdjajj a;jh;ajdha;jdh
Once
this is done, Martha gets it to Oscar the grouch who is in charge
of getting this organized and on the web, with a copy to me. I measure
this assay in ten persons and treat those who are abnormal, all of
whom are miraculously cured. Those results I get to Ms. Minnie Mouse
who writes a paper with the data and gets it into a peer reviewed
journal. Once Martha is completely finished with the subject of thiamine,
she can move onto another topic or have a nervous breakdown, her
choice. All of this is overseen by several people, so that if one
person does have a nervous breakdown or a ME/CFS relapse and is out
of the picture for a while for any reason, another person steps into
the oversight role.
Sounds
easy? The chances of our putting together a comprehensive picture
of the potential metabolic pathways is close to zero. But who knows,
it might be fun.
.
Basic Rules:
1. The
goal is to serve ME/CFS patients, aid the research, and explore treatment
options, all collectively referred to as "the cause".
2. No
one gets paid, but expenses reimbursed if we have any funds.
3. All
material put into the website is accessible for free to anyone.
4. If
a book or manual ultimately comes from the data collected, all who
participate in the research group will be listed.
5. Persons
who are interested in the research group but don't actually do anything
will be gently excused from further involvement. No hard feelings.
This is going to be a difficult job; some persons will not be up
to it because of their illness or because of other commitments. The
majority of persons who start it will probably lose interest. Maybe
even me. If that happens I would hope that someone else oversees
it.
6.
There is no rush, everybody goes at their own pace. But they have
to work at some pace. The
piece someone undertakes should not sit for six months because
others are waiting for it. If someone is down and out for a while
for any reason they notify me and I will try to get another volunteer.
Please let me
know what you think, and we can decide if we want to get started.
If you are enthusiastic, outline what you see as your strengths and
weaknesses and what you would like to work on. Everything to me should
go to this e-mail: lynnews@davidsbell.com.

Lyndonville
Research Group
For Chronic Fatigue Syndrome
The
Lyndonville Research Group
was formed by Dr. David Bell to compile and disseminate information
regarding Chronic Fatigue Syndrome. The team is working on such projects
as raising awareness in communities and schools of the presence of
children and adolescents who have CFS and how to best meet their medical,
educational and social needs.
Our most
recent undertaking has been a twenty year follow-up study of the first
100 children that were treated by Dr. Bell for CFS. The findings were
then presented by Dr. Bell at the 2005 International Conference of
Fatigue Science in Tokyo, Japan in February, 2005. We are anticipating
a very busy year in the realm of research and are beginning several
new projects in the near future.

For
those interested in disability issues,
a writer friend in the LRG sends this:
"I
am a writer seeking contact with CFIDS patients for an account of
CFIDS disability issues. I would like to interview people willing
to share their thoughts and stories concerning any or all of the following:
1) how your illness has impacted your ability to work; 2) how having
CFIDS has affected your own sense of identity and your capacity to
live a normal life; 3) what kinds of experiences you've had negotiating
disability issues with the medical community, with government and
private insurance carriers, and with the general public as well as
those near and dear to you who've had their own struggles to understand
this illness.
I can promise neither fame nor remuneration for your generosity, only
my own effort to respect these grave and delicate matters and to write
with the intent of raising public awareness about CFIDS and the cultural
climate in which we experience it.
I taught college English for 27 years and have had CFIDS for over
20 years. I now live on SS disability and the income from a very small
writing business. I will be as timely as possible in my replies to
you. Thanks to all who write: CFIDS SCRIBE/280 Speed Hill Rd./Brooktondale,
NY/14817."


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