David Tuller crowdfund: Trial By Error: Reporting on ME/CFS and Related Controversies

is there a #tag for Davids crowdfunding?
be nice to get one mentioned on MS s twitter.

 

I think the $5000 has just been reached.

 

$72,834
76% of target
792 donors
7 days remaining

 

Thank you ... I tend to be a bit rushed at lunch times.

 

Already had a couple of goes. I wonder if anyone else might be doing a matching offer?

 

NZ time Saturday 11.A.M. I will donate again in the next few days.

 

No can't do. Currently $75,404, and was definitely well over $70,404 without any match.

 

Agreed, clearly. But it's just interesting, and no harm done?

 

Just emailed a request to fund David!

The Barclay Foundation

Charity no. 803696
Contact details

• Email: mseal@ellerman.co.uk
• Tel: 02079150915

Public address

• 2Nd Floor, 14 St George Street, London, W1S 1FE

Aims & activities
Provision of grants towards organisations with a focus on, but not limited to, medical research, aid for the young, and aid for the sick, disabled and disadvantaged.

What the charity does

• The advancement of health or saving of lives
• Environment/conservation/heritage
• Other charitable purposes

Who the charity helps

• Children/young people
• Elderly/old people
• People with disabilities

How the charity works

• Makes grants to individuals
• Makes grants to organisations

There are only 7 days left to meet the funding target needed for academic and Public Health Journalist David Tuller to continue for the fight for ME patients in the UK and elsewhere.

Your Foundation states,

'Aims & activities
Provision of grants towards organisations with a focus on, but not limited to, medical research, aid for the young, and aid for the sick, disabled and disadvantaged.'


I am appealing for consideration to help a funding appeal to benefit people with ME and CFS.
https://crowdfund.berkeley.edu/project/14941

"In the last three years, I have seen patients’ suffering and their courage. I am in awe of their analytical skills and scientific smarts. This project has been and continues to be such a moving and rewarding experience for me. I had no idea it would last this long, but my work seems to be helping to push events forward. That’s why I am seeking another round of support through Berkeley’s crowdfunding platform. The funds I raise through April 30th will go toward covering my position for the fiscal year from July 1, 2019 to June 30, 2020."

We are patients and carers doing what we can; fighting for justice and services. http://nandsme.blogspot.com/p/homepage.html

This is one of the 600 group members in Norfolk and Suffolk taking action.

Both Jo (below) and I have donated to this cause, Will you also consider doing so?

Barbara Robinson carer with two family members with ME.

https://crowdfund.berkeley.edu/project/14941

Jo_moss_leaflet.pdf


FYI
Esteemed Journalist Jerome Burne this week.

The claim that the cure for the crippling fatigue of ME/CFS was to change your mind always seemed bizarre. Now it really is on the way out…



http://healthinsightuk.org/2019/04/...emed-bizarre-now-it-really-is-on-the-way-out/

Jerome Burne is a freelance journalist specialising in biosciences, medicine and health. He writes forThe Times's Body and Soul and T2 sections, and has also written regularly for the Sunday Telegraph, theIndependent, theGuardian, the Financial Times and the Daily Mail

 

$78,241 now, 82%, so someone must have added another big donation (the $5000 one has not been added yet). Effectively we’re at around 87% including the matching

 

Sweden has 69 donors at the moment, which I think is great, especially in comparison with last year.

What seems to have helped a little bit was posting in Swedish in the Swedish ME groups, explaining why Tuller's work is so important to us in Sweden, and giving examples that people can easily relate to (for example how Cochrane's systematic reviews affect Swedish sickness payment policies, which is a massive problem for lots and lots of pwme).

What helped more was the fact that a well-known author, who recently published a book about her life with ME, is promoting the crowdfund.

However, the biggest jump by far in numbers happened when one person offered to help people make the actual donation. She is letting people send their money to her through Swish (a very easy to use mobile app that most(?) people in Sweden are familiar with), and then she makes the transfer to Berkeley for them.

So, it seems that the main thing stopping Swedish pwme from donating is the money transfer itself. Most people seem to think it's too difficult to figure out how Berkeley's donation process works, there's the language barrier, and perhaps some people also have security concerns about using their debit/credit card on the internet.

 

Could you briefly explain the situation in Sweden: how many patient organizations are there? Do they report on Tullers activities?

I'm trying to understand why so much more people from Sweden and Noway are willing to donate compared to Belgium and The Netherlands...

By the way: Erica Verilla has added the 5000 dollar. The crowdfunding is now at 88%. So it's still possible to go to 100%!

 

I'd say there is only one "real" ME patient org in Sweden. It has approx 1800 members. (One other org is basically a one man show, I believe? And there's one org focused on a different group of patients, lumping many diagnoses and undiagnosed people together, of which ME is a small part).

No, they don't report on Tuller's activities (they don't report much on anything else either, nowadays...) There used to be frequent reporting and discussions on Tuller's work in their members-only Facebook group, but that was all done by members. That Facebook group has since been shut down permanently, sadly.

They donated to Tuller's crowdfund last year after several of us members suggested it to them. I don't know if they plan on making a donation this year. I would have loved to see them support the crowdfund at least by allowing their members to donate through them (for example through the easy-to-use mobile app I mentioned in my previous comment), and then transfer the money to Berkeley.

I just realised that I forgot to mention the currency issue in my previous comment. Many pwme find it difficult to calculate the amount when donating in a different currency, and it's a very expensive mistake if you accidentally donate the amount in USD instead of SEK (200 SEK is about 21 USD, and if you accidentally donate 200 USD... )

There are a number of independent groups on Facebook, though (two of them have more than 3500 members). And there's also some smaller but very active groups focused on research, international news and advocacy etc, where a very large part of the in-depth, high-quality discussions take place about the kind of issues Tuller is working on.

I'm not sure but I don't think Twitter is as big a thing among Swedish pwme as it is in certain other countries.

There are some excellent bloggers as well, who blog about Tuller and share info through linking their blogs on their Facebook pages etc.

 

Huge thanks to Erica Verilla for doing the double donation. It was really generous of her and gave a great impetus to the fund. Getting it over the line seems much more possible now . It is getting close anyway.

 

I don’t think Twitter is particularly big vs Facebook anywhere ...it’s not particularly good on its own for campaigns for that reason (some would say it very rarely returns the time, effort and money put in...which is why the job of feeding Twitter is always given to the most junior member of the team).

Interestingly the UK uses Twitter more than the rest of the EU or the USA ....it’s still low though (12% using these stats)

http://gs.statcounter.com/social-media-stats/all/europe

 

I find https://www.xe.com/currencyconverter/ this currency calculator very helpful in working out the real costs of other currencies.

 

I think the ME charities should give donations. David has advanced the understanding of ME and made it possible to fight back against the BPS school of thought. Without any of this the charities would still be trying to do this themselves and wouldn't have been nearly as successful (not having a dedicated resource).

With everything David has accomplished it has meant the charities are able to focus more on other things including where new research should be targeted. The charities contribute to funding and I would say that a donation of £1000 from each of them wouldn't put too much of a dent in the amount that they put into research but it would make a huge difference to keeping David going and able to maintain the fight at the battlefront.

We are all benefiting from his work and it could be looked at as another form of research (I am trying to justify a donation in terms of where it would sit for a charity expenditure) - even if it is one where it is enabling us to discount and disprove the studies which have been massaged to give more appealing results (to some). Without this work the charities would be fighting a much harder battle and I think if they could support this cause as well it would give the final boost that is needed.