Do you have some important ME questions you want answering?

Hello

Would you like the opportunity to ask your question on ME, direct to the health minister?

This week, there is an opportunity to do just that.


You need to be free at 10.30am on Thursday, yes a bit early for us ME-ers, but it is only your computer, so you can access it from your bed if need be.

Here are the details.

Please let me know, what you think of it.

Kay Gilderdale, was it the right decision?

Hello

This week, has been a big ME week, with the Kay Gilderale case, below are some remarks on what has been going on.

Afme

The ME Assocation.

Daily Telegraph

Miriam

Hope With ME WFunding Biomedical Research into MEith Biomedical Research into ME

Hello

I would like to wish you all, a very Merry Christmas, and better health for next year.

I look forward to giving you more news in 2010.


After posting this, the following came in, and is worth including in this post:

Funding Biomedical Research into ME


Two charities are joining forces to fund research into ME/CFS.



ME Solutions and Invest in ME are working together to maximise the opportunities to fund research into ME/CFS. The research project is -

The role of XMRV in modulation of NK cell cytotoxicity and NK cell gene abnormalities in ME/CFS patients and normal blood donors

The project will be carried out by Dr Jonathan Kerr and his team from St. George's University, London, and Dr Amolak Bansal of the Department of Immunology, Epsom & St Helier University Hospitals NHS Trust.

Background to the project

A newly discovered γ-retrovirus, Xenotropic Murine Leukaemia Virus - like virus (XMRV) has recently been found to be present in the blood of 68 of 101 (67%) ME/CFS patients as compared with 8 of 218 (3.7%) normal healthy controls (Lombardi et al, 2009). XMRV has been cultured from T, B and NK cells, but primarily targets NK cells. NK cell dysfunction has previously been found to be abnormal in ME/CFS, despite their numbers often being largely unaffected.

Defects in the innate immune system are thought to play a key role in the pathogenesis of ME/CFS and these abnormalities may leave individuals susceptible to XMRV infection. This study will relate the presence of XMRV in NK cells with ME/CFS-associated abnormalities previously demonstrated in NK cells and ME/CFS-associated gene abnormalities.

Plan of Investigation

A sample of clinically-diagnosed (according to the Fukuda and Canadian criteria) ME/CFS patients and age-and-sex matched normal controls will be recruited. XMRV status will be determined and NK cells obtained and tested for ME/CFS-associated gene abnormalities in NK cells. XMRV status will be related to ME/CFS gene expression changes.

Donations

ME Solutions and Invest in ME welcome sponsorship and donations for this two year project which we hope will begin as soon as possible.

The links below will allow online donations to be made.


Every click

Just giving.


For further information about making donations to this project please contact -


Support ME Awareness


Miriam

Your Name
Your Email Address
Subject
Message
Image Verification Please enter the text from the image: [ Refresh Image ] [ What's This? ]

Low dose naltrexone, have you tried it, what do you think of it?

Hello

Are you like many ME sufferers, looking for an answer to their illness, a way to get away, from this living death experience, one drug that is being debated at the moment is naltrexone, you can find out more about it by clicking here.

The ME Association, are looking to find people who have tried it, how they found it, what side affects did you have, and what general feedback can you give please, you can give feedback, by clicking on the link below, thanks, feel free to edit/add your feedback, a space has been made available for this purpose.

Miriam

Your Name
Your Email Address
Subject
Message
Image Verification Please enter the text from the image: [ Refresh Image ] [ What's This? ]

Is there hope in sight for ME?

Hello

Yesterday in the Independent, we are given hope, has science found the answer the cause of ME? Please click here to find out more, let's hope so.

Won't it be nice, to be free, from our living death existence, once and for all.

Miriam

Your Name
Your Email Address
Subject
Message
Image Verification Please enter the text from the image: [ Refresh Image ] [ What's This? ]

Social networking and ME?

Hello

This week has been a tad busy, its been snowing, and I've been loving it, I have been going out, and standing out in it, its been wonderful.

I have also had one media interview on ME for some national magazines, and sent one article to the local rag, that was published, regarding the judicial review, that is being held next week over the Nice guidelines for people who have ME, it will be interesting to see how it goes.

However, I have also had a light bulb, experience, I was watching South Today, and they said, about a guy, that had a social networking site for people who have cancer, then I thought, is there any such thing for people who have ME? I am not really into them, I think they are a bit dodgy, as you never know, if the person/people you are talking to are geniune or a fruad, so what I did, was contact Afme, and The M E Assocation, to see if one exists if non does, I will ask for a piece to be put in their mags, to see if there is a need, and possibly do a video for You Tube, asking the same thing, if there is a need, I might try and reach it.

One big thing about ME, is the issue of isolation, as many sufferers can't get out, I know, I am one! this would help people connect with each other. I would have to make sure that it involved minimal work on my part, however at the moment it is very much at the research stage.

Do you know if there is a social networking site for people who have ME, if there is, please do let me know its url, if there isn't, would you like to see one come together, thanks. I would not so much use it as a money making venture, but as a way for people who have ME to support each other.

Miriam