Invest in ME Newsletter November 2006

Newsletter
No.06/11  November 2006
November 2007

Welcome to the Invest in ME Newsletter for November 2006.

November is a critical month for the ME community. With Dr. Ian Gibson publishing his Inquiry into ME at this time and the final date for submissions for the NICE guidelines on CFS/ME being 24th November then the implications for people with ME and their carers could be optimistic or devastating.
Gibson Inquiry
ME Awareness Month
IiME International ME Conference
Sponsor a GP
NICE Guidelines - IiME Response
ME and CMO Response
EveryClick Helps
ME gallery
Have a Cuppa
Young Hearts Day
Sophia - A Year On

IiME have delivered our IiME response to the NICE guidelines. We have been appalled at the lack of precision, the lack of quality, the lack of accuracy and frequent inconsistency in the document.

These guidelines cannot be endorsed as they are. At the same time there appears an associated publication which has been published by NHS Plus service in the UK (see here) under the euphemistically named title "Evidence-based guidelines". This one NHS document has spawned three other pamphlets - all obviously connected with the NICE guidelines in an effort to indoctrinate healthcare staff and the media  into believing that psychiatric paradigms are the way forward.

We hope to review these documents fully and lobby accordingly as they look to be even more nonsensical than the NICE guidelines. Written by psychiatrists they have no place in the treatment of people with ME.

On the bright side ME Research UK have announced their conference and it will compliment the IiME International ME/CFS Conference in London on 2nd May - all of which will promote ME Awareness Month 2007.

And the success of the Have a Cuppa For ME idea is proven with a great story from an IiME friend.

Gibson Inquiry

Just a reminder that the Gibson Inquiry into ME is scheduled to publish its long-awaited report on 23rd November - see here.

For anyone in the UK whose MP may not yet have heard of ME feel free to spread the word - join our ME & My MP campaign to make your MP familiar with the illness - see here.

ME AWARENESS MONTH MAY 2007

Invest in ME is working to promote ME Awareness Month 2007 - which we hope will see a month of activity to raise awareness of myalgic encephalomyelitis in the media, the public and especially with healthcare professionals.

ME Awareness Month should be the one time that all ME Support groups can work together - and not just in the UK but across the world.

IiME will happily publicise events being held anywhere to support the cause of ME awareness and funding for biomedical research into ME.

Please let us know of any events planned across the world. Our events diary will be updated accordingly - see here.

Conferences

The UK conference is now arranged and we hope that this conference will start the ME Awareness Month events on a high note. We welcome support from all of the ME community.

 

IiME International ME/CFS Conference 2007

The IiME International ME/CFS Conference 2007 will be in London on 2nd May 2007. This will be open to all and includes a range of ME experts giving presentations on subjects ranging from epidemiology, diagnosis, treatments, protocols, research, and experiences.  

All of the pages for the ME/CFS Conference 2007 have now been set up - see here. Use our mailbox for more information - ME Conference 2007. Use the buttons below for going direct to specific conference pages -
Home Registration Details Agenda  Venue Awareness Month Conference 2006

In addition to the speakers announced previously we also welcome Dr. Leonard Jason of de Paul university in Chicago. Dr. Jason is an expert on ME with regard to epidemiology and sub-grouping.

Pre-Conference Day - 1st May

We also plan on holding a pre-conference day on 1st May for support groups and pwme which will be attached to the main conference day. This will be a less formal event with a core set of subjects being discussed. With the speakers at the main conference day also present on the pre-conference day this will be an opportunity for ME groups and pwme to work together with the speakers to discuss a range of important topics. An agenda for this day is being formed now by IiME. Please join us for both conference days. Healthcare staff are also welcome.

A discounted rate for the main conference day is available for those who also attend  the pre-conference day.

Here is an appeal to ME Support groups. Please help us to get more GPs, paediatricians and other healthcare staff to the ME Conference 2007. IiME are offering a discounted rate to healthcare professionals who are being sponsored by a ME support group or charity. We wish for as many professionals to listen to the information being presented by the world-renowned speakers who will be attending the conference. Bring them along to the Pre-Conference Day also, if you can, where there should be more time to speak with the ME experts presenting at the conference.

More details are here.

NICE Guidelines - IiME Response and Your Comments
Our response to the full version of the National Institute for Health and Clinical Excellence (NICE) draft document for clinical guidelines has been made.

It is available for downloading from the page of information on the NICE guidelines - see here. We have also added the Redefining CBT article by Margaret Williams which she kindly sent to IiME - see here.

Invest in ME opened a page for your comments on the NICE guidelines. An example of the comments received -

From Caroline:
"Your comments are straight to the point and make short shift of the mumbo jumbo written by NICE.
I agree wholeheartedly with IiME on every point that you make."

Read more here


From Joan:
"I applaud IiME for there response. I hope that sense will prevail, however I do agree with IiME that legal representation may well be the only way forward."

Read more here


From Nancy:
"The guidelines are out of date before they have been published. People with ME are better off with no guidelines than with the modern-day equivalent guidelines suggesting beef tea for ME!"

Read more here

As this is published the closing date for submissions to NICE is closing. We hope NICE listen to our concerns and those of other groups who are interested in the future health of people with ME.

You can have your response to the NICE guidelines posted on our NICE comments section here.

Our efforts to speak to the UK's Chief Medical officer are being ignored. Our current page shows the status of our efforts - see here. It is amazing that the CMO refuses to speak with ME support groups and charities despite the prevalence of ME in the UK running at 5 times the level of HIV/AIDS patients.

Likewise the Secretary of State for Health, and her deputy minister, have no time to come to the IiME International ME/CFS Conference next May.

We haven't given up, though. This is the other part of the scandal in the UK with regard to treatment of ME. Even the officials who are responsible for healthcare are apathetic.

Help us change this - join the ME & My MP Campaign (here) and get your MP interested.

Likewise, with our international friends, if you have made contact with parliamentarians, senators or congressmen - let us know their views. Contact IiME

Ok - this is an idea we have stolen from ME Research UK. By using Every Click (www.everyclick.com) and making IiME your charity of your choice then you can earn money for IiME. But, as we've stolen the idea, then if you don't wish to use help IiME then please choose ME Research UK as your charity (charity number SC036942) or CFS Research Foundation (charity number 1011900). Either way it's an easy way to assist funding of biomedical research. 

From Our gallery of Friends

Jayne: "At last a group that seems to be telling it as it really is, and able to bring the right people together so that we can change how this horrible illness is treated & perceived.
I can't do much to help, housebound most of the time. But will gladly subscribe & support any way I can.
A voice of sanity in the mess of ME politics.
"


Janette: "You are doing a great job, I wish there were more like you out there.  The work you are doing to fight for proper research into ME is greatly appreciated, I am sure by many ME sufferers, and definitely by me, please keep up the good work."

Thanks to all for the kind feedback. The following from Brigitte shows why we need to keep going -


"Because I am already so long so ill and it is just getting worse, I don't think I am going to survive until they find someday (for example in 20 years) a medication to really treat CFS. Medicine does not go that fast and research also not. That is how I see it. But at least, we can fight for the children!! And the ones that come after us! So that they don't need to go through all this... ."

Read our Guestbook Gallery here.

Have a Cuppa for ME
Jan Kelsall organised her own Have a Cuppa event. After spending some time bed bound Jan has made an enormous effort to help biomedical research by organising her event in Staffordshire. Jan has raised 200 for IiME and we shall be passing that on toward biomedical research.

Many thanks to Jan for this.

Details can be found at - http://www.haveacuppaforme.org

Proceeds would go to biomedical research funding - one of the charities actively funding biomedical research, such as ME Research UK or CFS Research Foundation.

It is a year ago since the IiME web site was first opened. One of the earliest pages we made was in support of the Young Hearts remembrance set up by Jane Colby. There's little positive to say about ME and the way it is treated in the UK. One of the positive points has to be the amazing resilience and determination of young people who have ME. We happily give space again this year to remember again - see here.
One of those young hearts taken has been that of Sophia Mirza. It is a poignant note to end this newsletter on that on the day that NICE close their acceptance of submissions to their draft guidelines for CFS/ME then it will be one year to the day since Sophia Mirza died from ME.
IiME wish to mark this with our web page made for the day. Feel free to send this page on to others.

For those of us caring for pwme we can only imagine how hard it is for Sophia's mother, Criona.

This newsletter gets sent to MPs, healthcare professionals as well as ME support groups/PwME. For those of you reading this newsletter who have a chance to affect the way ME is perceived or treated please work with us to ensure we never get another story of a young life being taken in this way.

(Sophia's story is here)

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Suomi Talvi - but spring is coming
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