Welcome to our Newsletter
November 2018
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Invest in ME Research is an independent UK charity campaigning and facilitating for biomedical research into myalgic encephalomyelitis (ME).
More details of the charity are here.
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Invest in ME Research
Christmas / New Year Fund Appeal
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Invest in ME Research's Christmas / New Year fund appeal has a distinct web page.
The appeal is to raise funds to establish more research and education for our Centre of Excellence for ME.
From our Press Release is here - click here -
If a quarter of a million UK patients were ignored by the healthcare system, left to research their own disease, subjected to establishment-controlled discrimination, offered only deleterious treatments as recommended by flawed NICE guidelines, and offered no hope of a way out from this situation due to zero funding being allocated for fundamental research into the disease – if this were true then it would be seen as a national scandal in any civilised society.
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We have had several very generous donations already and campaigns to raise funds.
They can be seen on our Christmas Tree fund page - click here
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Our Christmas / New Year appeal will have an advent calendar during - well, during the advent period. Starting 1st December keep a check on each day - click here
Please help us promote our appeal on social media and through hospitals, GP surgeries and schools. The more we educate and the more we can raise awareness then the more rapid we will find solutions.
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NICE Guidelines- Making It Up As You Go Along
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Congratulations to NICE for their "successful" strategy and tactics that got them just what they wanted when deciding the composition of their guidelines development group.
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Strategy requires thought, tactics require observation and NICE has played both.
NICE has again managed to politicise ME by their cynical selection process and established a guidelines development group that is already unfit for the requirement.
We commented on this flawed and unsatisfactory process in NICE Guidelines Development - A Continuing Saga of Ineptitude - click here
Some are happy to accept a balance in this group between those who subscribe to a biopsychosocial (BPS) view of the disease and a sufficient number who do not.
Some call for “realism” in what to expect from NICE - whatever that means.
This sounds suspiciously as an acceptance for fudge and consensus from those who have more self-interest than concern for patients.
A balance was never necessary - neither was, or is, consensus.
NICE should be concerned with protecting and taking care of patients - yet patients are the last to know what is going on and the NICE selection process has lacked transparency.
These flaws in the selection process will eventually prove to be costly.
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We are pleased to announce that Invest in ME Research was successful in applying for an Awards for All grant to raise awareness of ME. We will have more news in our later newsletter.
This is the second occasion that the charity has been granted an award from the Big Lottery.
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Thinking the Future
Young/Early Career Researcher Conference
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Thinking the Future - the Young/EarlyCareer Researchers International Network - is an initiative created by Invest in ME Research to encourage and support new and early career researchers to enter the field of ME.
Recently the charity arranged another conference call with NIH to discuss the Thinking the Future network for young and early career researchers. Also participating were the early working group of young researchers.
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The discussions agreed on plans going forward that will support two more events planned for 2019 - one in Washington in April and one in London in May - and establishment of a web site for the group and its activities.
The charity has proposed a number of initiatives that can follow as the group expands.
This is an initiative that we feel will play a very meaningful role in the future development of research into ME.
Read more
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It is two years since Stacy Hart's poem One Stupid Dot was included in our Journal of IiMER.
This brilliant, unique poem was recently given a new mode of expression and understanding with this excellent video from What's Up TV.
Click on the video below
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Me and M.E, how can ‘One Stupid Dot’ make all the difference
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As we recently commented on the situation in Norway concerning ME, a country that has all of the pre-requisites for providing high-quality biomedical research aligned with the best services to patients.
Two recent news items from Norway show that discussions are still continuing around adequate research into ME.
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The Norges ME Forening wrote to Norwegian prime minister Erna Solberg about commitments she had made - click here
An open letter to the Norwegian minister of health Bent Høie was publicised in this article - click here
As we pointed out last month in Norway there is the infrastructure for ME to do things differently, to do things well - to do things better. It takes serious levels of incompetence, or apathy to get it so wrong.
EMEA Norway member Norges ME Forening is arranging an open day for 27th November that includes those speakers listed below in the image -
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Michael Van Elzakker et all have published this paper - Neuroinflammation and cytokines in myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS): A critical review of research methods - https://www.frontiersin.org/articles/10.3389/fneur.2018.01033/abstract
It is good to see more research areas calling for reproducible methodology to be used in ME research.
Earlier in the year at the Norwich Centre Fiona Newberry et al published this fine paper - Does the microbiome and virome contribute to myalgic encephalomyelitis/chronic fatigue syndrome? - http://www.clinsci.org/content/132/5/523
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World Health Organisation ICD Classification News
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From Suzy Chapman's DX Revision Watch web site comes news from the WHO/MSAC/CSAC committees -
"The [G93.3 legacy categories] will retain its name and remain within the Nervous system chapter."
This follows a proposal from Dr Tarun Dua, last year, recommending that “Myalgic encephalitis/Chronic Fatigue Syndrome (ME/CFS)” [sic] should be removed from the Diseases of the nervous system chapter and reclassified in the Symptoms, signs chapter as a child under Symptoms, signs or clinical findings of the musculoskeletal system, it was initially unstated whose position this controversial recommendation represented.
Suzy Chapman, and with Mary Dimmock, has been extremely active over a long period challenging possibly harmful changes to ICD classification and maintaining awareness of these issues.
Read more
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ME Conference Week 2019 News
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The ME Conference Week in May 2019 sees Invest in ME Research arranging a week full of events aimed at progressing research into ME.
We are very happy that NIH will again be participating.
Also very happy that the Open Medicine Foundation will be with us in force.
Our ninth Biomedical Research into ME Colloquium already has representation from nine countries.
Registration for the fourteenth International ME Conference is open - click here.
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In our Christmas / New Year Fund Appeal we were pleased to receive a very generous donation from Caroline John.
Caroline's story brought us to the subject of long term illness through ME.
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Many of the consequences of long term illness through ME are rarely recognised by society.
Read more
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Klara Jancikova Wilson
It is with great sadness that we report the passing of Klara Jancikova Wilson. Klara was a wonderful advocate and great supporter of IiMER. She raised a great deal of funding for the charity via ebay and other means.
Klara's name may not be immediately obvious or recognised.
As with all those genuine advocates she never asked for, or wanted publicity for herself and never tried to take credit or publicise the things she did - instead just being content to help and make progress.
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Funding Research and Awareness of ME
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Thanks to all our supporters who are raising awareness and funds for research into ME.
Below are some of the recent campaigns.
More details of current and past campaigns in the links.
We owe a great debt to those performing these events. We also want to thank family and friends who also are involved or support these efforts.
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This Tuesday 27th November PayPal are doubling donations received through the PayPal fundraising page and app, up to a maximum of £5,000 total matching donations on the day,
The donations match will start at 00:01 GMT on Tuesday 27 November 2018 and will be in effect until they reach their match limit of £50,000.
Invest in ME Research is a charity enrolled with PayPal Giving Fund. Paypal will simply collect and double the donations that are received to benefit IiMER on 27th November through PayPal’s fundraising page and app. up to the maximum allowed
https://www.paypal.com/gb/fundraiser/charity/15464
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Invest in ME Research has had some good news this past month. Thanks to the best supporters that any charity has we have been able to kick off our Christmas / New Year Fund Appeal and have been humbled by the generosity shown.
A matching donation from a wonderful supporter of the charity who wishes to remain anonymous has raised almost £4000 for the Fund Appeal.
Caroline John has donated £1000 and helped us raise the plight of the long term ill from ME.
A donation from the Rotary Club of Carlisle Castle will likely attract a matching donation from a bank.
We also have other ongoing campaigns - all building on the back of the recent fund/awareness raising activities of supporters.
We hope to be able to announce more good news soon.
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Earlier in the year the charity funded a trial of the No Isolation AV1 robot for young people who could not attend school.
The trial was a success.
One of the participants, Makayla, continues using the robot. The student services staff at her school, Priory Community School, have now even welcomed the latest AV1 (nicknamed "Robbie") into the new school year by making a cape.
A lovely story.
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Thank you to all our supporters and friends.
We welcome all support for developing a UK Centre of Excellence for ME and continuing to maintain the foundation for future biomedical research into ME,
Best wishes,
Kathleen McCall
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