Tuesday, December 15, 2009

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


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Sunday, November 22, 2009

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


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Saturday, November 21, 2009

Should care services be free?

Hello

You may have read here, some time ago, that I had written to my local MP, with regards to care services and having to pay for them.

I have had a letter back to say, that once accessed, for the first 6 weeks, you can have care services for free, but if you need to continue to have care services after that 6 weeks, then you can either be means tested for a continuation of the services, or they can give you information on charities, that can help for free, so a step in the right direction.

Of course, we have also had the queens speech this week, and the more severe amongst us, can have ongoing care for free, as long as it is put through parliament, before the next election, if Gordon Brown doesn’t succeed you may have to wait a little longer depending on who gets the vote!

So vote Gordon Brown, if you are in that category at the next election.

Miriam


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Sunday, November 8, 2009

Hello


A few weeks ago, there was an item on 'Politics Show' whereby people on the IOW, were being given around £300.00 a week, care money for carers helps, or any other services they needed.

So I contacted my local Social Services to find out more:

The following is their response, I hope it helps some people:

Each individual needs to contact their own Social Services, they will need to confirm their address and other personal details; date of birth , General Practitioner, NOK etc.

They can request an assessment of need under the NHS and Community Care Act 1990. Resulting from this assessment if you have eligible needs as described in the Department of Health Circular "Fairer Access to Care Services" which can be found on the DOH web site. Your borough council will only provide "services, including direct payments or a personal budget" to meet "Critical Needs" under "Fairer Access to Care Services". I must mention that all services provided by Community Care are subject to a financial assessment and a contribution based upon income and savings, investments etc will be part of the overall assessment process.

Miriam


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Saturday, October 24, 2009

Could I get ME/CFS as a result of getting Swine Flu?

Hello

This is a good question, and 'The ME Assocation' has taken this on board, and answered the question, please check out their answer here, thanks.

If you are short of energy, please go to the answer, which is point 10, if you have more energy, you can read the whole article!

Miriam


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Saturday, October 10, 2009

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



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Sunday, October 4, 2009

Want more research into ME?

Hello

A big fat yes! so do others too!
Infact there has been a blog put together to help with this cause, its name is called Just4quid, you will find out more information by clicking on the link above.

Miriam



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