A message from Annette Whittemore:
Hello Everyone,
The Invest in ME Conference just ended a few hours ago. This conference brought new and exciting ressearch to ME that is soon to be published. Dr. David Bell discussed how the patients that he saw as children are now adults around 40 years old. Several have cancer, while others are still severly ill, but the majority are coping and say they are well but are actually still living with CFS. Dr. Demeirlier continues his important XMRV research, in Belgium and around the EU, finding many of the sickest patients positive for the retrovirus. Dr. Mikovits showed more "footprints" of XMRV infection from the patient's immune system data and described how XMRV seems to act more like HTLV than HIV. Dr. Bieger, a delightful iimunologist from Germany, is doing exciting work with XMRV and EBV. The rest will have to wait until the conference DVD is completed.
Discussions following the conference were very lively as those in the audience stated their frustration with the British medical/political establishment at not having adequate medical care in the UK. Howeveri, all in all, it was the best conference to date. I am overwhelmed with emotion over the expressions of thankfullness for all that the WPI is doing to bring awareness of this disease to the rest of the world. I wish we could all get together in one place to share stories and meet face to face. I realize how connected we've become, in our quest to find the answers to this devastating disease. I'll be flying home tomorrow while Judy travels to Ireland to give another presentation and more hope to those who suffer. Goodnight all!
Annette Whittemore
Doctor Speedy and ME in search of medical honesty
thank you so much for investing the energy to post news for us. And good news at that.
ReplyDeleteI bought the DVD for the 2008 IIME conference too and it wasn't bad. It was refreshing to see health professionals in the UK who talk about M.E with the seriousness that it deserves.
ReplyDeleteI would like to hear more about what Dr Bell said- like a statistical display of the percentage of patients suffering from cancers and how this compares with an age matched population of healthy controls.
I was diagnosed with M.E at a local NHS hospital in 2005, but believe that to be a misdiagnosis as my health deteriorated after getting bitten by a tick bite. I was diagnosed privately with Lyme Disease in 2008 (and Bartonella hensalae in 2009). All these conditions (and autism) seem to be connected somehow so I always watch which way the resarch is going with all these things. Thanks for posting.
Neelu
Annette Whittemore and all of the WPI staff are angels. We apprecaite so so much all that you are doing for us!
ReplyDeleteI have to say also that "Invest in ME" are making a very good impression on me - they are on of those ME organizations that shines, while other organizations that say that they are in favour of ME patients, seems darker than ever. Ofcourse their darkness make IiME looks more shiny, but IiME would have been shiny anyway.
Thank you, WPI, for all that you're doing for us. You are true angels!
ReplyDeleteAnd thank you, IiME, for being a glowing star in such a period of darkness (and you're a glowing star no matter what the background is - dark or bright).