Work Done by the ME Community

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DokaGirl

Senior Member (Voting Rights)
Many have encountered the attitude that pwME are the undeserving sick, and should, among other things do our own fund-raising. For those advocating for government biomedical research funds, it might be useful to have a collected list of some of the fund-raising, research, conferences etc., organized by our community. The entire list cannot, of course be completely articulated. Over time, thousands have participated. Many in government, as well as the public will not be aware of our contributions, nor our determination to solve this terrible life-altering illness. However, if advocates could provide such a list to decision makers, it would indicate that pwME are working in all arenas to solve this.

Here are a few for the list:

1) Open Medicine Foundation (U.S.); "over $24 million raised since 2012: https://www.omf.ngo/

2) Solve ME/CFS Initiative (U.S.), funds research: https://solvecfs.org/about-us/

3) National ME/FM Action Network (Canada)https://www.mefmaction.com/; "Hosts conferences and host of the 10th international IACFS/ME clinical and research conference for ME/CFS, FM and related illnesses in Ottawa on September 22nd to 25th, 2011";

"Spearheaded the Working Case Clinical Definitions, Diagnostic & treatment Protocols for ME/CFS and FM Consensus Documents, known world-wide as the Canadian Definitions": https://solvecfs.org/about-us/

4) Milliions Missing Canada,https://www.millionsmissingcanada.ca/ along with Action CIND https://www.actioncind.org/about/, and the National ME/FM Action Network worked to bring about the August 2019 Health Canada announcement regarding the status of ME as a serious biomedical disease, as well as new research funding.

I've missed all of the UK groups - apologies - time and energy ran out. Please add more to the list if you are able.

Thank you very much for your comments!

ETA: added some UK groups in next post

ETA #2: Collecting just some of this into one list, demonstrates the tremendous effort expended by the dedicated thousands who have worked for decades to reveal the true nature of ME.
 
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5) Science for ME; "Where science and the ME/CFS community meet"; new studies and discussions posted everyday; clearing house for many issues and research about ME: https://www.s4me.info/

6) ME Association (UK):
"Recently, we announced the full details of our decision to invest nearly £200,000 in ME research. The grants were awarded to:
The ME Biobank to continue with their vital work until such time as the resource becomes self-sustaining,
Dr Karl Morten and his team at Oxford University who will be investigating the recently reported blood plasma anomalies,Dr Keith Geraghty at Manchester who will obtain and report on patient evidence in that crucial period before and just after diagnosis."https://www.meassociation.org.uk/

7) Invest in ME Research:"An independent UK charity Finding, funding and facilitating biomedical research into Myalgic Encephalomyelitis (ME)" http://www.investinme.org/index.shtml

8) ME Research UK:"ME Research UK exists to fund biomedical research projects – as simple as that. To date, we’ve invested over £1.4 million on 42 distinct studies involving many of the systems of the body." http://www.meresearch.org.uk/

9) MEAction (U.S., and other locations): advocacy group: https://www.meaction.net/
 
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You can add:

1. Action CIND held #RUN4ME and raised over $10,000 for ME Research in Sept 2019.

2. Action CIND has hosted several webinars on various ME topics. A few of note were with the Workwell foundation (another coming in March), Dr Alain Moreau (3 times), Linda Tannenbaum of OMF and others

3. Action CIND has helped to coordinated May 12th world wide since 2009

4. Action CIND, Millions Missing Canada, AQEM and MEFMAction invested numerous hours to help produce the final grant that ultimately got the grant. They sit on the executive of ICanCME and Action CIND has other volunteers involved in this initiative.

5. Action CIND helped to arrange a media interview on it recently with Dr Riina Bray - head of Ontario’s EHC clinic.

6. There’s also several behind the scenes efforts that many people have helped and continue to help . List is too long to catch them all. There’s also countless volunteers helping to make these events possible. A list like this is concerning in some ways as many good efforts may be missed or timing wise cannot be listed as it would disrupt their impact.

7. also meresearch.info to help advance research was developed by Mike Lapenna who now collaborated with Action CIND.

Might be more. ME brain isn’t working well this morning.
 
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Action CIND said:
You can add:

1. Action CIND held #RUN4ME and raised over $10,000 for ME Research in Sept 2019.

2. Action CIND has hosted several webinars on various ME topics. A few of note were with the Workwell foundation (another coming in March), Dr Alain Moreau (3 times), Linda Tannenbaum of OMF and others

3. Action CIND has helped to coordinated May 12th world wide since 2009

4. Action CIND, Millions Missing Canada, AQEM and MEFMAction invested numerous hours to help produce the final grant that ultimately got the grant. They sit on the executive of ICanCME and Action CIND has other volunteers involved in this initiative.

5. Action CIND helped to arrange a media interview on it recently with Dr Riina Bray - head of Ontario’s EHC clinic.

6. There’s also several behind the scenes efforts that many people have helped and continue to help . List is too long to catch them all. There’s also countless volunteers helping to make these events possible. A list like this is concerning in some ways as many good efforts may be missed or timing wise cannot be listed as it would disrupt their impact.

7. also meresearch.info to help advance research was developed by Mike Lapenna who now collaborated with Action CIND.

Might be more. ME brain isn’t working well this morning.
Click to expand...


Thank you @Action CIND for this list. Your organization, as well as many others have worked for countless hours over decades to improve the situation for pwME. And yes, it is unavoidable that many excellent efforts may, or will be missed. However, it seems important to have a list, even a partial one. It's important to emphasize this is only a sample of the work that has gone on. Examples missed in the first two lists above, include large donations to the CFIDS Association of America back in the early 1990s. There may be some way to collect all this info from all groups and individuals over the decades, but that's beyond the scope of the effort here.

The attitude that pwME are lazy benefit scroungers is pervasive. When people in this community advocate for government funds for biomedical research, it may help to counteract this negative attitude if the community can show the work that has been accomplished.

Collecting just some of this into one list, demonstrates the tremendous effort expended by the dedicated thousands who have worked for decades to reveal the true nature of ME.

Thanks very much again for your additions.
 
who exactly propagates this shameful and dehumanising attitude . could it be the so called society that we live in which has been manipulated by those in positions of power to disenfranchise the sick and disabled of any rights whatsoever . damn this I had it thought out and obviously it disappeared after typing the first sentence unfortunately this happens so often many of my post fall well short of their original intent .
 
@alktipping

Thank you for your comments. I understand, thoughts escape almost before they are formed, and spoken or written, due to ME memory problems.

There are a number of articles on the Net about the perception of benefit recipients as unworthy of receipt of this support. PwME are among these.

Here is one example about those with disabilities or illness:

"The unwilling and the unwell’? Exploring stakeholders’ perceptions of working with long term sickness benefits recipients"

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Abstract
This paper draws on qualitative research with Incapacity Benefit (IB) stakeholders in the North East of England, UK. Stakeholders’ experiences of working with long-term sickness benefits recipients reveal multiple barriers that both sick and disabled people, and themselves as practitioners, clearly face. Reflections on what ongoing welfare reform could mean for future practice for both stakeholders and recipients will be explored. The findings suggests that whilst stakeholders recognise the complex barriers faced by those receiving sickness benefits, a wider moral dialogue between ‘deserving’ and ‘undeserving’ is being created and sustained as a result of negative stereotyping of sickness benefits recipients.

https://www.tandfonline.com/doi/abs/10.1080/09687599.2012.758032

Here is the MEpedia link about "Stigma and discriminiation": https://me-pedia.org/wiki/Stigma_and_discrimination

We can hope that with more awareness, pwME will come to be correctly understood as having a valid, biomedical disease.
 
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