Many of you will have seen my video from this morning, it has lead to a lot of questions from patients and a lot of alternative suggestions have been added into the mix. I am writing this blog partly to get my own thoughts into some semblance of order but also to give a better insight into how I see the ‘Fund’ working.
After receiving this email –
I posted on all of Foggy’s social media platforms last night –
So…..2 weeks ago I sought legal representation for…‘The #mecfs patient community vs NICE’Today, I was given information on costs.Whilst I believe the amount was crowdfundable, I have decided against taking it further.Our charities aren’t being transparent Re. the actions they will be taking and I would be horrified if I crowdfunded for weeks amongst pwme only to find action was being taken elsewhere & funded internally.Barristers/Solicitors took the case seriously.There is a legal case here.Stop ‘playing NICE’
So now…..’M.E/C.F.S Patients’ Legal Fund’
I posted this video this morning – https://twitter.com/i/status/1433344723549401090.
I literally had the idea 10 minutes before, I only had a very rough idea in my head as to how it would work! That probably explains why I posted this an hour later –
Pondering….. I would also want a diverse Committee of 7 members from around the #UK from the #mecfs patient community. Literally, to be able to decide which projects to fund and to have some accountability. No one already involved in orgs or charities – COI. Get in touch.
Since I posted this about 6 hours ago, I have been bombarded with ‘what ifs’ and alternative suggestions, hence why I am writing this blog. I have been told to collaborate with charities and other organisations. That makes no sense to me, firstly there would be conflicts of interest to think about but secondly, this new initiative is happening because the status quo is not working as effectively as the M.E/C.F.S patient community WORLDWIDE would like (Ripple effects are WIDE!).
I have chosen to do it this way as it is the most M.E-appropriate way for me and other M.E patients to get the job done and ensure change happens.
I have now ‘recruited’ 3 people onto the Committee (Kat, Kirsty, and Lisa xx) I would still like 3 other Committee members please. I would like the Committee to be diverse and represent different viewpoints so we fund the ‘right’ projects in future after robust debate.
To be clear, I am anticipating a bit of concerted effort getting the Committee structure and ‘constitution’ set up and signed off, creating the crowdfunding campaign and promoting it, and just generally getting everything up and running. But, after that, we won’t be actively working/campaigning other than meeting occasionally online (schedule yet to be discussed/decided) to discuss suggested legal cases. Those legal cases will be suggested to us by UK M.E/C.F.S patients but also raised amongst the Committee itself.
Given the quote I received was £5000 + VAT, I believe we should crowdfund for £15,000. This would allow us to have, in theory, two legal cases ‘in the bank’ on standby. When funds dip to £5000 we crowdfund again. I am open to suggestions on the amount to raise though, these are just my initial thoughts.
The Committee will decide what happens to unspent money at a certain point in time so funds aren’t just left stewing in the pot for years on end. This decision will be included in our ‘structure’ and constitution.
This will not be a business or charity. It is simply a group taking responsibility for the ‘legal fund’ pot of cash, making sure it is spent responsibly and for the benefit of the M.E/C.F.S patient community.
As I suggested in my video post, I will use the social enterprise (not for profit) business structure of M.E Foggy Dog to organise an appropriate bank account to hold the crowdfunded funds. I have already contacted my accountancy connections to ask if they want to be involved/ be an overseer. I’ll wait and see what happens with that.
No one on the Committee will be a lawyer and so, other than liaising with law firms regarding payment, we will have no involvement in the cases themselves. The M.E/C.F.S patient community will be ‘the client’. I see this ‘Fund’ simply as an enabler for legal action.
Someone had asked if this would be for all chronic illnesses, I said no because the M.E/C.F.S patient community has a lot of legal/political issues to fight and it won’t be an inexhaustible pot of cash. However, I would argue that other chronic illnesses such as Long Covid would also benefit from any successful legal action as the ripple effect will have wider implications.
That’s as far as I have got, 7 hours after having the idea!
If you are part of the M.E/C.F.S patient community and feel able to contribute please email me via – email@example.com – messages are getting lost in the social media bombardment and I don’t want to miss anyone’s offer of help.
and Foggy (OBVIOUSLY) xxx