UK: #JusticeforME fundraising for legal case for UK Government to provide specialist ME/CFS medical care

[Sasha]

From my experience with them (see #48 above), clarity and transparency are not their strongest attributes.

That's not a good sign.

@Binkie4 Their lawyers can only communicate with those instructing them ie. #JusticeforME

They're a conduit to them, though, presumably, if anyone wants to get in touch.

 

[Cinders66]

I just received an email from Crowd Justice seeking funding for this cause, I don’t know if it adds any information but it reads more clearly than information I have previously seen:

Urgent support needed: Help secure specialist ME services through legal action


Repeat of the link to the funding page https://www.crowdjustice.com/case/justice4me/

Thanks. It sounds better but still too vague. Afaics, the UK "delivery plan" proposed support services for the mild to moderate, very severe m.e cyphoned off as an acute-need category … unsure, as so little info is shared, whether that's purely around nutrition & hospital care or covers ongoing medical & supportive care at home … & wider severe m.e - the rest of the 25% severe - isn't covered / catered for at all. Adressing these areas individually and what they want for each group would help.

The last bit "More than a million people in England are estimated to live with ME. This legal action seeks to clarify the responsibilities of health authorities and ensure that people with ME receive consistent, evidence-based care across the NHS. " I don't necessarily agree with those figures and framing. I do like the attempt to clarify responsibilities and drive consistent standards, yes!!! .. However "evidence based" in this field has often , bec of sheer refusal to do other research, just meant CBT or "NICE" agreed evidence, the basics of pacing, which is same old, it doesn't even stretch to melatonin for sleep.

As someone very severe but not critical as I have a feeding tube in place, I want the same medical care & therapy support that other neurological conditions in my area get (- I have a strong neurological presentation - dysphagia, hypertonia contractures & suspected dystonia , cognitive impairment & severe sensory sensitivity - ) but currently get nothing at all (except occasional dietician) and want access to off-level, compassion-led, drugs as appropriate. eg I didn't tolerate Abilify but with such strong anecdotal reports, I believe in the right of the long-term severe to try it. Dr Bansal prescribed mine but he has now retired.

 

[Binkie4]

From my experience with them (see #48 above), clarity and transparency are not their strongest attributes.

@Binkie4 Their lawyers can only communicate with those instructing them ie. #JusticeforME

Yes. I was suggesting that a letter could be sent to the campaign #JusticeforME c/o their lawyers if this is possible, not any communication with the lawyers, if anyone wanted to do this.

 

[Cinders66]

I haven’t seen them on X I don’t think.

I did some AI chat - see screenshots - about the DHSC delivery plan as is and legal challenge, it seems to be suggesting that the omission of severe ME care is due to the lack of additional funds committed by the plan, which limits its potential. I asked whether it was legal to carry on ignoring severe ME, and it said it's possible to challenge it under the Equality Act, but this justice movement seems to be a broader challenge?
Our charities aren’t going to do anything, so it will need to be patient-led, but I'm tired of anonymous patient rep! it doesn't reassure when we can have wildly different experiences, views and priorities& they're asking for money!
However, if they do get something through to challenge the gvt / NHS & its film flam, I would be very grateful for their work.

 

[V.R.T.]

I just feel quite worried because this may be a big opportunity to change things. If they are actually successful with this legal challenge and ask for 'specialist care' without being more specific then BACME will just fuck us all over again, and now none of us can complain because 'it's what we wanted and we went to court for these services'. It will be more grist for the 'pwME are never happy and paranoid and always complaining' mill.

I do not have the capacity to engage myself sadly but I strongly recommend that some of us get in touch through the lawyers and try to persuade them to get more specific about the type of services we need. Physician led, specialist nurses, home visits etc etc.

This could be a really good thing if we get it right. If we get it wrong it could fuck things up big time. It will be harder to ask for the right kind of services and research hubs when there's academic interest if we already have a shiny new gazillion pound BACME gaslighting machine in place.

 

[Sasha]

Our charities aren’t going to do anything, so it will need to be patient-led, but I'm tired of anonymous patient rep! it doesn't reassure when we can have wildly different experiences, views and priorities& they're asking for money!

@Jonathan Edwards, did you have any luck in making contact?

I'd also like to see our charities stepping up.

 

[Jonathan Edwards]

@Jonathan Edwards, did you have any luck in making contact?

No.

 

[Sasha]

No.

Thanks very much indeed for trying. That's quite worrying, though, that you had no response.

Unless they've got social media, it seems the only possibility of direct contact is to donate and use the comments facility on the donation page - with no guarantee that they would read it, and of course, the comment would be public, which would risk undermining the fundraising.

 

[Binkie4]

No.

Thank you for your efforts.

 

[MrMagoo]

Has anyone contacted Sarah Boothby to ask? She is on Bluesky.

 

[Valerie Eliot Smith]

Has anyone contacted Sarah Boothby to ask? She is on Bluesky.

That is an excellent idea.

Unfortunately I can't do it (see my post #48 earlier) but it's a very sensible suggestion.

 

[MrMagoo]

She seems to be the only known member.