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.

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."