Thursday, August 20, 2009

Will You Help Me Dance? (fighting CFS)

I've lived with a serious, disabling and chronic neuro immune illness called Chronic Fatigue Syndrome (CFS) for the past 19 years. This illness goes by many names including Post-Infectious Chronic Fatigue Syndrome, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and in the past was known as chronic Epstein-Barr virus (CEBV). You can find out more and learn the answers to questions such as, "What is ME/CFS?" or "Is it contagious?" by visiting the FAQs at the Whittemore Peterson Institute's website.

The Whittemore Peterson Institute is working hard to find both the root cause, as well as a potential cure, for CFS. They are a wonderful, compassionate group of researchers who have given me more hope in the fight against this illness than I have ever had. To help them keep moving forward, I would love to be able to purchase two tickets to their fundraising event, I Hope You Dance, on Sept. 12, 2009. I cannot afford these tickets on my own, but am asking my friends to consider chipping in to help me out.

Fundraiser tickets are $250 each. I would love to be able to purchase two, one for myself and one for my husband, so that we can attend this event and learn more about the ongoing strides at WPI. I'm asking you to consider helping me earn my way this benefit with your donation of even a dollar or two. For each person who helps me out with $5 or more, I will enter your name/email into a drawing for $30 in free products from Affordable Mineral Makeup™. If you can send me $10 or more, I will enter your name/email in a drawing for a Flower Bead Set necklace and bracelet from Gurrlie Girl ($68 value; or you may specify that you would prefer 2 entries into the makeup give-away if you would prefer). Any gift of $20 or more will get you entered into both drawings!

Whatever I can collect from this little drive will be donated to the Whittemore Peterson Institute even if I don't reach my ticket purchase goal, so ever little bit helps!!! Today it's a struggle even to walk, sometimes I'm in a wheelchair or simply in bed. Riding a bike just to the end of my block is no longer an option. Swimming is too much for me. Climbing a flight of stairs is overwhelming and leaves me breathless, wobbly and in pain. But I have hope that someday I will have a body that functions as it should again, and then I will be able to dance! Will you help me?


Joanne said...

Hi Just had to say that I was diagnosed with ME/CFS but a chance course of Amoxicillin given for a throat/chest/sinus infection led GP to suspect Lyme Disease. Other patients had been diagnosed at the surgery in the early stages.Eventually I saw a private doctor who confirmed her suspicions and I am now nearly 100%.Although I had 6 1/2 years illness and was retired early from the Civil Service.

Through a chat line Eurolyme I am in touch with many other patients 75% who had previously been misdiagnosed as ME/CFS but who now diagnosed with Lyme and on appropriate antibiotics are getting their health and lives back.

NICE guildelines say Lyme must be ruled out before diagnosing ME/CFS but because of the controversay over diagnosis of lyme this is not adequately being done.
HPA follows IDSA guidelines which are currently under review see
Steven Phillips presentation of 25 studies of seronegativity and persistent infection is well worth seeing.

Do have a look at my blog top right are links into much research and support groups and bottom right my story.
Let me know what you think when you have had a good read you will be staggered at what has been going on which has caused thousands of patients the World over to be denied adequate and appropriate treatment.
A recent e mail I had from Charles Ray Shepherd said he was watching closely what was developing over the IDSA review. What a pity he did not do his own research of which there has been ample for anyone to read for many years which exposes the 2006 guidlines as totally in adequate.
Best wishes to you in finding something that helps your ME.

Jenni Saake (a.k.a. InfertilityMom) said...

Hi Joanne,
Thanks for sharing your story. I have been repeatedly tested for Lyme over the years (remember, this has been a 19 year journey) and ever single test has been negative. In fact, that was one of our starting places, thinking it was Lyme rather than CFS, but there is simply no indication or evidence that Lyme is a factor for me, even though it has been recehed by several different doctors and labs in different ways many times.

Joanne said...

Hi Jenni
Glad to see you have considered lyme then.
Thanks for commenting on my blog. Good luck with finding something that works for you.

Tara Burner said...

You know I keep you in my prayers and am glad to know you and be able to help you with your goal.

Cheryl said...

I can attest to the fact it's been a lonnnnnng time gf. I pray they figure out how to help you, so you can minister to your family in good health!