Go to the pandoranet.info web site above to sign up for their newsletters to stay on top of the wonderful advocacy they are involved in.

Read the latest (Note:  It is fairly lengthy - you may want to save the sites to your favorite places to read later unless you are able to print the articles out to read, which is what I try to do:

- Dr. Lenny Jason's Interview with NYT

- 2008 CFSAC May Meeting

http://agentforchange.blogspot.com/

 

Also the Empty Chair Project was sponsored by P.A.N.D.O.R.A at the May 2008 CFSAC meeting in conjunction with other ME/CFS support groups - wouldn't it be wonderful if we had people who could represent us at one of those meetings:

http://www.pandoranet.info/emptychairproject.html

 

 

 

Web site for Info about Family requesting donations to keep their ME son alive.

http://www.michaeldessinhelp.com/

 

 

ME Advocacy Project 

For those of you who are able, this is an excellent advocacy project. It does take some reading and thought and action. But some of you are able to do this. Although May 12th is past, advocacy is never time limited so please consider doing this as advocated by the www.name-us.org by those who have

http://www.name-us.org/AdvocacyPages/Advocacy.htm#Request_for_Congressional_Action

 

 

An Interview With International Awareness Day Founder and Leader of RESCIND , Tom Hennessy

For those of you who are new to M.E./CFS, you will find this interview by Cort Johnson with Tom Hennessy very interesting and perhaps clarify some issues you may have regarding the history of this disorder.  http://phoenix-cfs.org/InterviewHennesseyCFS.htm

 

 

Latest ME/CFS ImmuneSupport.com Newsletter

Topics include:

- Fair Name Campaign Update

- Drug and Supplement Interactions

- Vitamin D - Defense for Cancer

- Research Abstracts include:

    * ME/CFS Gene-expression Subtype

    * Lyme Prevention Antibiotic

http://www.immunesupport.com/library/showarticle.cfm/ID/8868/e/1/T/CFIDS_FM/ 

 

 

 

A Fair Name Campaign

 

Nancy Note:  I have my opinion about this campaign and I'd like to hear about yours. Please read the latest update at the web site www.afairname.org and share your opinion. Basically, the web site is being revamped and should be available in September. Eventually there will be a vote. The push is towards ridding us of CFS, however, they want to use ME/CFS as an interim name. This sounds good but ME is supposed to reflect primarily myalgic encephalopathy but those diagnosed with myalgic encephalomyelitis can still use that name.

 

Now for those of you who are relatively new to this (I've had ME for nearly 25 years), you may wonder what difference does it make. Well, MEitis was defined a long time ago and it was suggested that the epidemics that occurred in the 80s when the CDC investigated this illness, they shot down the possibility that what these people had was MEitis and set out to create a new name. We ended up with CFS.

 

Now they want to create a new name -- ME/CFS as a way to change from CFS to ME. Some may feel it doesn't matter - just get rid of CFS. I can't argue that point too much except that Dr. Nancy Klimas reports that 80% of us have inflammation. So it boggles the mind that we should choose a new name (MEopathy) yet again for the 20% rather than go with the majority who obviously have myalgic encephalomyelitis.

 

As I said this is just my opinion. I'd like to hear yours. If you want to get involved, share your opinion on the fair name message board and I'll see it there.

 

Before this is settled, we need as many opinions from AROUND THE WORLD as possible. There IS GOING TO BE A VOTE. I'm not sure, Dr. Lapp may know but I suspect the vote will occur later this year after the "fair name" web site is revamped.

 

And for those of you who may not yet be aware of the possible link between cancer and ME/CFS read on (from Co-cure):

Date:    Tue, 3 Jun 2008 12:31:44 -0400
From:    "Pat Fero <bp.fero@charter.net> via Co-Cure Moderator"  <ray@co-cure.org>
Subject: NOTICE: Jerry Crum

I met Jerry Crum at a CFSCC meeting too many years ago. Jerry was on the committee, fully participating in discussions, but I do not remember the agenda item. I DO remember thinking that this man was level headed and passionate. I knew that he had CFS and cancer, but at the time, I had no idea about the possibilities of cancer in ME/CFS patients, nor a clue about heart problems, early organ failure or the suicide rate.

This morning I found this in my e mail. Maybe it has been posted already...

"I am sorry to inform you that Jerry Crum died yesterday. As you recall he was one of the original patients from the Tahoe outbreak and had persistent HHV6a viremia and positive CSF. He survived Mantle Cell Lymphoma for 12 years perhaps in part due to the antiviral therapy and immune therapy he received the entire time. The NIH has been able to develop a cell line from his MCL and isolate HHV6A from his bone marrow and peripheral tumor cells. Jerry was a true hero for the cause of CFS and HHV6A. We mourn his departure but must continue the scientific efforts."

It is so entirely sad to think of the loss and the looking forward to ongoing scientific efforts. Maybe by the end of June when the Baltimore CFS and Viruses conference is held, I will see what piece of the puzzle Jerry put into place to make this happen in 2008. But for right now, I think of lives lost. It is what it is.

Because of fine, fine people like Jerry, we have to move forward with conviction...but not today.

Pat Fero
Wisconsin
Note:  For those who aren't familiar with Pat, her son died from ME/CFS and heart complications.
 

 

 

Fibromyalgia Newsletters/Alerts

I'll also share newsletters, etc. with that I think you might be interested in.

 

Worried About Pain Killer Addiction? Why You Shouldn't Be!   From the Fibro/CFS Blog on About.com  http://chronicfatigue.about.com/b/2008/05/18/worried-about-pain-killer-addiction-why-you-shouldnt-be.htm

 

 

 

Fibromyalgia Network May 2008 E-News Alert

http://www.fmnetnews.com/pages/enews/May08.html