A Fighting-Fund for Legal Action for ME Patients Harmed by the BPS Proponents and/or National Medical Organisations

Countrygirl

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Just to keep everyone in the loop.

We have a new fund-raising petition which is just beginning to circulate on Facebook which aims to raise a fighting fund of £20 000 for legal action.

Two weeks ago, a doctor asked me to create a file of patients who were harmed by GET. In little more than three days, I received more than 130 case histories and the document is now 170 A4 pages and about 90 000 words. At the end of last week, I was asked by another doctor to gather case histories of the children harmed by one particular lady paediatrician. I only have a few so far but they are quite shocking and involve threats and coercion. The children, in the worst cases, have been made so severely ill by the actions of the paediatrician that the children are on feeding tubes when they had only been mild/moderate prior to being referred.

After the case histories were read by the ME community's leading medics and charity representatives, group litigation is now being planned and legal advice is being sought.

Sally, who has prepared the petition is collecting the funds so that the community has the funds to proceed as this will be an expensive undertaking.

We are investigating whether patients outside the UK can be part of the group litigation or whether they would need to be part of a separate venture.

This is one introduction to the petition which is just in the process of being circulated.

Up and banging the fundraising drum.
***Please share***
We may not have energy, but we have plenty of heart and we have plenty of fight!

Our charities can't do it all so help support the #MECFS Patients' Legal Fund and give #pwME a fighting chance for justice

https://www.crowdfunder.co.uk/mecfs-patients-legal-fund...
#crowdfunding

#socialjustice

https://www.crowdfunder.co.uk/mecfs...yOJrfGOmcVVAs-caFcDAojJ0d1BMx6MHH_Xpmh-TXYBy0


M.E/C.F.S Patients' Legal Fund
by M.E/C.F.S Patients' Legal Fund in Southsea, Portsmouth, United Kingdom


Hi,

I'm Sally Callow, Founder of ME Foggy Dog, a social enterprise based in the UK. As an advocate, I have noticed that increasingly over recent years, the M.E/C.F.S patient community has been frustrated at the perceived lack of legal action from M.E/C.F.S charities in relation to political decisions and what appear to be breaches of the law by Government and policymaking organisations.

The current National Institute of Health and Care Excellence (NICE) M.E/C.F.S guidelines delay has brought this issue to the fore. Many believe this was an unlawful act and yet our charities have, so far, not taken legal action. Today marks 20 days since NICE announced the delay, 9 hours before they were due to be published.

Please read this blog to see how I/we reached this point in the past week.

M.E/C.F.S Patients' Legal Fund

As you read in the blog above, this fund will not be paying for legal action against NICE for their guidelines delay (as it currently stands). The charities are heavily involved with this process and so are much better placed to take appropriate action if necessary and when they deem appropriate.

This fund will enable future legal cases relating to matters that directly affect at least half of the UK patient population i.e. not individuals or specific areas/clinics of the UK.

Think guidelines and policy issues rather than individual PIP disputes or negligence by a specific clinic.

We are waiting to see if this project is successfully crowdfunded before creating our Committee, though there are currently 4 volunteers waiting to get cracking!. Most of us are patients ourselves and so cannot afford to spend lots of time and energy on the formation of a Committee that may or may not be necessary. The need for a Committee is entirely dependent on this project reaching its target. This Committee of 7 M.E/C.F.S patients/carers (still seeking 2 more Committee members from the M.E/C.F.S community - get in touch!) will be responsible for the money raised and will ensure funding will only be allocated to cases that will benefit the M.E/C.F.S patient community in the UK.

Although our fund will only be available for UK legal cases, be in no doubt, political decisions and guidelines published in the UK have a ripple effect worldwide. There are millions of people around the world who are affected by decisions taken in the UK because their own Government chooses to adopt UK guidelines and/or policy. I have been personally contacted by many of these patients in recent weeks, they have been desperate for legal action to be taken as they see the significant impact UK decision-making has on the rest of the world.

Please also consider that Long Covid patients are now also being affected by M.E/C.F.S policy and guidelines due to the similarities between the two illnesses. Again, the ripple effect is far-reaching. The need for this type of project is greater than ever before.

Rough idea of how the fund will work (It will be formally written up in the Committee 'Constitution' and published if this crowdfunding is successful. We will be transparent about how the Committee operates and any funding decisions taken)

- We successfully crowdfund.

- Committee is 'formally' set up.

- A patient/group of individual patients contact us and ask if we could fund a legal case.

- The patient/group of individual patients provide us with an outline of what the cases involves, the name of their Barrister/Solicitor and estimate of costs from their law firm.

- The Committee 'meets' (virtually) to discuss each proposed case and will decide on funding projects based on transparent criteria.

- The Committee pay the law firm direct.

By crowdfunding, the M.E/C.F.S patient community and their allies are paying for this legal action, not one specific person or organisation. The Committee are simply gatekeepers of the funds, this means legal representation can be sought, and viability of the case can be established relatively quickly. Without the need for a delay whilst the proposer raises initial funds to see if there is even a case to be had.

We have decided to raise £20,000 as we believe this is a realistic amount of money for what it is intended for - to 'fund' more than one legal case. However, each individual case will be different and will cost different amounts - much more or less. As you read in the blog above, I was quoted £5000+ VAT by the law firm I was in contact with. However, I am very aware that this was just a starting point. The £5000+ estimate was solely for an initial opinion and advice on the merits of taking the case forward.

Possibilities to be considered when the Committee is formed

-The Fund may simply fund the initial 'opinion and advice on the merits of taking the case forward' on a range of proposed cases.

- Give each proposed case a fixed sum so that work can begin.

- After an extended period of inaction (to be decided by the Committee) remaining funds will be given to M.E/C.F.S biomedical research. The funds will not simply sit in a bank account for years on end.

The responsibility for the legal cases remains with the proposers. Any additional required funding, outside of that given by the Fund, must be raised by the proposers.

As was said at the beginning of this essay, this fund is simply enabling legal action.

If this crowdfunding project is unsuccessful every donor will have their contribution refunded. We need to be realistic as to the costs of taking legal action. We see this project as a test to see if it is possible for the patient community and their allies to fund their own legal action.

We hope to bring about social change for M.E/C.F.S patients through enabling legal action.

Thank you for looking at our project and please donate if you are able to.

Legal Dispute
This project aims to raise funds to resolve a claim, or other type of dispute. Neither Crowdfunder nor the Project Owner can guarantee the outcome of that dispute, or that it will be resolved at all. Due to the uncertain nature of disputes, it is not possible for the Project Owner to be sure that the amount it raises will be enough to resolve the dispute or to see it through to its conclusion. If the desired outcome of the dispute is achieved in the first instance, it may be subject to appeal and may be overturned.
 

Judee

Senior Member
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and I think some of us outside the UK would contribute to the UK fund....
I also wondered if we could because it was showing Pounds and didn't look like there was a conversion tool but when I went to the Help Centre page it has a topic, "Can I Pledge from Abroad?" in the center lower column. That seems to have instructions on how to do so outside of the UK. :)

Just thought I'd post in case there are others not in the UK that wanted to donate. Hopefully, they can get to the goal sooner that way.
 

Countrygirl

Senior Member
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I also wondered if we could because it was showing Pounds and didn't look like there was a conversion tool but when I went to the Help Centre page it has a topic, "Can I Pledge from Abroad?" in the center lower column. That seems to have instructions on how to do so outside of the UK. :)

Just thought I'd post in case there are others not in the UK that wanted to donate. Hopefully, they can get to the goal sooner that way.
We are also asking legal specialists if people from other countries can be part of the group litigation or whether it would have to be a separate group but probably suing the same organisations/people.
 

Countrygirl

Senior Member
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I hope these people will be brought to justice.
It is about time they were!

At this minute, a young woman is in danger of dying because the local hospital maintains ME is a mental health issue and have been so abusive and unkind to her, that she refuses to return to them to have a feeding tube inserted. Moreover, the staff are also resisting her need for admittance and don't want to insert the tube. This situation is of increasing concern.
 
Messages
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441
Just to keep everyone in the loop.

We have a new fund-raising petition which is just beginning to circulate on Facebook which aims to raise a fighting fund of £20 000 for legal action.

Two weeks ago, a doctor asked me to create a file of patients who were harmed by GET. In little more than three days, I received more than 130 case histories and the document is now 170 A4 pages and about 90 000 words. At the end of last week, I was asked by another doctor to gather case histories of the children harmed by one particular lady paediatrician. I only have a few so far but they are quite shocking and involve threats and coercion. The children, in the worst cases, have been made so severely ill by the actions of the paediatrician that the children are on feeding tubes when they had only been mild/moderate prior to being referred.

After the case histories were read by the ME community's leading medics and charity representatives, group litigation is now being planned and legal advice is being sought.

Sally, who has prepared the petition is collecting the funds so that the community has the funds to proceed as this will be an expensive undertaking.

We are investigating whether patients outside the UK can be part of the group litigation or whether they would need to be part of a separate venture.

This is one introduction to the petition which is just in the process of being circulated.

Up and banging the fundraising drum.
***Please share***
We may not have energy, but we have plenty of heart and we have plenty of fight!

Our charities can't do it all so help support the #MECFS Patients' Legal Fund and give #pwME a fighting chance for justice

https://www.crowdfunder.co.uk/mecfs-patients-legal-fund...
#crowdfunding

#socialjustice

https://www.crowdfunder.co.uk/mecfs...yOJrfGOmcVVAs-caFcDAojJ0d1BMx6MHH_Xpmh-TXYBy0


M.E/C.F.S Patients' Legal Fund
by M.E/C.F.S Patients' Legal Fund in Southsea, Portsmouth, United Kingdom


Hi,

I'm Sally Callow, Founder of ME Foggy Dog, a social enterprise based in the UK. As an advocate, I have noticed that increasingly over recent years, the M.E/C.F.S patient community has been frustrated at the perceived lack of legal action from M.E/C.F.S charities in relation to political decisions and what appear to be breaches of the law by Government and policymaking organisations.

The current National Institute of Health and Care Excellence (NICE) M.E/C.F.S guidelines delay has brought this issue to the fore. Many believe this was an unlawful act and yet our charities have, so far, not taken legal action. Today marks 20 days since NICE announced the delay, 9 hours before they were due to be published.

Please read this blog to see how I/we reached this point in the past week.

M.E/C.F.S Patients' Legal Fund

As you read in the blog above, this fund will not be paying for legal action against NICE for their guidelines delay (as it currently stands). The charities are heavily involved with this process and so are much better placed to take appropriate action if necessary and when they deem appropriate.

This fund will enable future legal cases relating to matters that directly affect at least half of the UK patient population i.e. not individuals or specific areas/clinics of the UK.

Think guidelines and policy issues rather than individual PIP disputes or negligence by a specific clinic.

We are waiting to see if this project is successfully crowdfunded before creating our Committee, though there are currently 4 volunteers waiting to get cracking!. Most of us are patients ourselves and so cannot afford to spend lots of time and energy on the formation of a Committee that may or may not be necessary. The need for a Committee is entirely dependent on this project reaching its target. This Committee of 7 M.E/C.F.S patients/carers (still seeking 2 more Committee members from the M.E/C.F.S community - get in touch!) will be responsible for the money raised and will ensure funding will only be allocated to cases that will benefit the M.E/C.F.S patient community in the UK.

Although our fund will only be available for UK legal cases, be in no doubt, political decisions and guidelines published in the UK have a ripple effect worldwide. There are millions of people around the world who are affected by decisions taken in the UK because their own Government chooses to adopt UK guidelines and/or policy. I have been personally contacted by many of these patients in recent weeks, they have been desperate for legal action to be taken as they see the significant impact UK decision-making has on the rest of the world.

Please also consider that Long Covid patients are now also being affected by M.E/C.F.S policy and guidelines due to the similarities between the two illnesses. Again, the ripple effect is far-reaching. The need for this type of project is greater than ever before.

Rough idea of how the fund will work (It will be formally written up in the Committee 'Constitution' and published if this crowdfunding is successful. We will be transparent about how the Committee operates and any funding decisions taken)

- We successfully crowdfund.

- Committee is 'formally' set up.

- A patient/group of individual patients contact us and ask if we could fund a legal case.

- The patient/group of individual patients provide us with an outline of what the cases involves, the name of their Barrister/Solicitor and estimate of costs from their law firm.

- The Committee 'meets' (virtually) to discuss each proposed case and will decide on funding projects based on transparent criteria.

- The Committee pay the law firm direct.

By crowdfunding, the M.E/C.F.S patient community and their allies are paying for this legal action, not one specific person or organisation. The Committee are simply gatekeepers of the funds, this means legal representation can be sought, and viability of the case can be established relatively quickly. Without the need for a delay whilst the proposer raises initial funds to see if there is even a case to be had.

We have decided to raise £20,000 as we believe this is a realistic amount of money for what it is intended for - to 'fund' more than one legal case. However, each individual case will be different and will cost different amounts - much more or less. As you read in the blog above, I was quoted £5000+ VAT by the law firm I was in contact with. However, I am very aware that this was just a starting point. The £5000+ estimate was solely for an initial opinion and advice on the merits of taking the case forward.

Possibilities to be considered when the Committee is formed

-The Fund may simply fund the initial 'opinion and advice on the merits of taking the case forward' on a range of proposed cases.

- Give each proposed case a fixed sum so that work can begin.

- After an extended period of inaction (to be decided by the Committee) remaining funds will be given to M.E/C.F.S biomedical research. The funds will not simply sit in a bank account for years on end.

The responsibility for the legal cases remains with the proposers. Any additional required funding, outside of that given by the Fund, must be raised by the proposers.

As was said at the beginning of this essay, this fund is simply enabling legal action.

If this crowdfunding project is unsuccessful every donor will have their contribution refunded. We need to be realistic as to the costs of taking legal action. We see this project as a test to see if it is possible for the patient community and their allies to fund their own legal action.

We hope to bring about social change for M.E/C.F.S patients through enabling legal action.

Thank you for looking at our project and please donate if you are able to.

Legal Dispute
This project aims to raise funds to resolve a claim, or other type of dispute. Neither Crowdfunder nor the Project Owner can guarantee the outcome of that dispute, or that it will be resolved at all. Due to the uncertain nature of disputes, it is not possible for the Project Owner to be sure that the amount it raises will be enough to resolve the dispute or to see it through to its conclusion. If the desired outcome of the dispute is achieved in the first instance, it may be subject to appeal and may be overturned.
Donation made. This project is long overdue and I commend those who are taking this project forward.
I'm tired of the stigma, discrimination and mistreatment that too many pwME have faced from the medical establishment in this country. Keep up the good work!
 

Celandine

Senior Member
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Thank you, @Celandine

It is hoped sufficient will be raised for group litigation. We think it may need a group of 20 to set a precedent which will then open the flood gates. We are seeking legal advice now.
It seems like there should be solicitors willing to take any medical negligence or malpractice cases on a no win-no fee basis. The trouble is that since the old (well, current, I guess) NICE guidelines actively promote GET, it would be hard to prove any malpractice. This legal fund would be more useful going forward, if the guidelines end up as we hope--fully excluding GET or any other exercise-based therapies, and doctors continue to use that approach. Then it would be clear that any damage done is pure malpractice. Not that we want that to happen to anyone, of course.
 

Mary

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I also wondered if we could because it was showing Pounds and didn't look like there was a conversion tool but when I went to the Help Centre page it has a topic, "Can I Pledge from Abroad?" in the center lower column. That seems to have instructions on how to do so outside of the UK. :)

Just thought I'd post in case there are others not in the UK that wanted to donate. Hopefully, they can get to the goal sooner that way.
Thanks for the link @Judee , it was helpful - I just donated, and I'm in California - it was easy! Mastercard is accepted all over the world! :rolleyes: