Campaigners in Scotland call for more ME funding

[MeSci]

http://thirdforcenews.org.uk/tfn-news/campaigners-call-for-more-me-funding

Campaigners are calling on the Scottish Government to provide specialist care and funding for research into ME. Jennifer Brea, director of the Oscar-nominated documentary Unrest, is backing the call and will join campaigners at an event being held at Holyrood on Tuesday. Unrest won a special jury award at last year's Sundance Film Festival and shows how Jennifer and her husband Omar battled to cope with ME when she became bedridden while studying for a PhD at Harvard University. Some 21,000 people in Scotland are currently affected by ME (myalgic encephalomyelitis) also known as chronic fatigue syndrome.

Janet Sylvester, from Edinburgh, whose daughter Emma, 24, has a severe form of the illness, said the #MEAction event would raise awareness of the condition and call for more to be done.

See link for rest of article.

 

[Esther12]

Calls for more 'education' and 'specialist care' always scare me. Things are still such a mess that this could do more harm than good.

 

[Joh]

Calls for more 'education' and 'specialist care' always scare me. Things are still such a mess that this could do more harm than good.

I would normally agree and activism can go very wrong - the worst review in Germany from the Robert Koch Institut was the result of well-meaning short-term-activists who asked for it and vanished afterwards and left us with the mess.

But in this case I'm sure that Emma knows what she's doing. She was disabled by GET (bedridden and wheelchair) and has done some amazing Scottish advocacy work so far with ME Action and I'm convinced that this Scottish group is on top of it.

 

[Guest 102]

Calls for more 'education' and 'specialist care' always scare me. Things are still such a mess that this could do more harm than good.

Having attended event I can assure you it didn't do more harm than good, Esther, so you can rest easy (bizarre, to be honest, that you would find 'harm' in this). Emma and her mother did a fantastic job in organising this event and I was very happy to be able to help out as a speaker. MSPs were engaged, for sure, they hopefully understood the neglect that is going on. A few of us contributed to Q &A - and a 20 min section of UNREST was shown and Jenn B spoke too via Skype.

 

[Joh]

 

[Guest 102]

I would normally agree and activism can go very wrong - the worst review in Germany from the Robert Koch Institut was the result of well-meaning short-term-activists who asked for it and vanished afterwards and left us with the mess.

But in this case I'm sure that Emma knows what she's doing. She was disabled by GET (bedridden and wheelchair) and has done some amazing Scottish advocacy work so far with ME Action and I'm convinced that this Scottish group is on top of it.

Agree! Education and specialist care is exactly what we need ( I say that with 35 years of ME). Why anyone would think this could do harm is beyond me. I hate to see the hard work of others misinterpreted.

 

[Guest 102]

 

[Valentijn]

Having attended event I can assure you it didn't do more harm than good, Esther, so you can rest easy (bizarre, to be honest, that you would find 'harm' in this).

I don't think that's a bizarre thing to worry about ... it's fairly common for patients to get abuse in return for asking for services. Most CFS clinics, for example, do exactly that. The situation certainly is unfortunate.

 

[Guest 102]

One of the points of the event was to highlight the harms of the CFS clinic in Scotland. We only have one such clinic up here, thankfully.

 

[Guest 102]

I suppose I found it bizarre to jump on the negativity of a proposal - seeing the negatives first and foremost - without actually looking at the details. I was asked by the organiser of this event to speak and though I am very weary of 'activism ' I agreed to do so because we have to highlight the harms of GET/CBT. And we did that successfully last night, which is a reason to be happy.

 

[Hoopoe]

@Nasim Marie Jafry thank you for attending the event. It's so important that patients speak for themselves.

 

[Guest 102]

@Nasim Marie Jafry thank you for attending the event. It's so important that patients speak for themselves.

Thank you. I was asked afterwards - last night - to speak at another couple of upcoming UNREST events but had to decline. I am just happy I could contribute to this event and am v grateful to the organisers.

 

[Esther12]

I suppose I found it bizarre to jump on the negativity of a proposal - seeing the negatives first and foremost - without actually looking at the details. I was asked by the organiser of this event to speak and though I am very weary of 'activism ' I agreed to do so because we have to highlight the harms of GET/CBT. And we did that successfully last night, which is a reason to be happy.

There weren't any details in the article, and that's all I had to go on. Pleased to hear you think that, in this instance, my concerns about calls for more 'education' and 'specialist care' were unfounded, but these things have certainly caused problems for patients in the past, so I don't think it's that bizarre that I'd be worried it could back fire again. I did only say it could do more harm than good.

 

[Invisible Woman]

The article here and in this thread are rather light on detaiis:

https://s4me.info/threads/me-generation-want-better-care-across-scotland.2178/#post-39622

Thanks for your hard work @Nasim Marie Jafry and I know Emma Shorter has done some great advocacy work too.

I am wary of general calls for more care etc. as I've seen people just end up with more of the same.

Wish these articles would explain exactly what was asked for. Maybe this inattention to detail in reporting leads to a lacklustre response in the community. Also demonstrates the deep lack of understanding in the part of the writer/editor (the writer not always having the final say).

 

[Dolphin]

I have to wonder whether this article was prompted in some way by publicity for the event given the timing. They are presumably talking about Esther Crawley's service

January 30, 2018

https://www.pressandjournal.co.uk/f...clusive-north-east-family-speak-of-me-ordeal/

“There is a clinic in Bath which helps English kids, but there is nothing in Scotland and that is why we need greater help from the medical profession and from politicians in the area.

Labour’s Lewis Macdonald said: “This is a distressing case. A young person who should be full of life and energy is not and it’s really important to ensure she gets the best possible treatment to deal with her ME.

“That might mean referral to expert help, for example the clinic in Bath, if she cannot access the support she needs here in Grampian.

“The sooner this is sorted, the better quality of life she will have in the years ahead.”

I have set up a separate thread on this:
https://s4me.info/threads/scotland-north-east-family-speak-of-me-ordeal.2193/

 

[MEMarge]

Those of us in the UK, who have been through the current ME clinics, particularly with youngsters in the last decade or so have been appalled at the pervasiveness of the psychogenic narrative. "Treatments" are GET and CBT mainly based on the PACE view.

Some have been subject to "child protection" intervention and been close to having children taken into foster care.

Towards Christmas, a person with ME who supports families in these cases was contacted by 2 families. One was under threat of enforced intensive inpatient treatment and the other had already been in for it, got much worse and they were doing even worse things.
This morning,a family popped up on a FB group I belong to. They have the SS (Social Services) coming round next week and want to interview younger child at school!

This is why we are wary of more services, because so many, if not most are still BPS based, especially the paediatric ones.

 

[chrisb]

@MEMarge

In such cases have the families asked for a letter from the SS (sic) with evidence as to the efficacy of the proposed procedure, and full disclosure of any adverse events of (anonymised) patients under the care of the proposed clinic.

One cannot help thinking that it might be worth making a video recording of the child before being subjected to treatment and asking the SS and the doctors to confirm in writing that this is a true and accurate recording of the child at the time.

 

[MEMarge]

Thanks @chrisb for your input, i will pass it on. It is not something I am v involved with and there were several useful posts on the FB site from Mums (mainly) who have encountered similar stuff themselves.

The other two were vulnerable families, who I think were probably still struggling, not surprisingly, with the consequences of having a seriously ill child for whom there is no cure, only maybe symptomatic relief for pain. Then apparently from nowhere you are getting threats from paediatricians or SS.

They are in shock, holding things together just and terrified that their children will be taken...

 

[Guest 102]

 

[TiredSam]

Agree! Education and specialist care is exactly what we need ( I say that with 35 years of ME). Why anyone would think this could do harm is beyond me.

From the above-referenced article:

https://www.pressandjournal.co.uk/f...clusive-north-east-family-speak-of-me-ordeal/

There was support for Abbie from two north-east MSPs yesterday.

Labour’s Lewis Macdonald said: “This is a distressing case. A young person who should be full of life and energy is not and it’s really important to ensure she gets the best possible treatment to deal with her ME.

“That might mean referral to expert help, for example the clinic in Bath, if she cannot access the support she needs here in Grampian.

I think it is very important to be concerned about what might happen when politicians are asked to consider the problem of lack of specialist care for ME sufferers. We've already seen it go horribly wrong in Germany, and the above excerpt shows what could go wrong in Scotland. Very far from "bizarre" to be concerned about such things.