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AYME refuses to call on QMUL to release PACE data

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Anyone know if this statement from AYME is up-to-date?

Dept of Health - Services for ME/CFS
The DoH announced £8.5m for developing new health services at centres in England between 2004 and 2006. AYME was been involved as the voice of young people at discussions about how the money was spent and in setting up the service. AYME is the only national charity still represented on this group and we regularly speak at NHS conferences and events. AYME facilitates a conference every 18 months for specialist NHS services and therapists run by the British Association of CFS/ME (BACME), and has a seat on the executive committee.
- http://www.ayme.org.uk/working-groups

If so, you wonder who decides that this charity should have that kind of influence.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
"Still represented" suggests that others have left.

It does, doesn't it.

It's always surprising to see the fairly random way such things get decided. When you think that AYME gets nearly all its funding from a combination of corporate donations and government grants, you have to ask whether they're a suitable group to be "representing" patients in such an influential way.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
It does, doesn't it.

It's always surprising to see the fairly random way such things get decided. When you think that AYME gets nearly all its funding from a combination of corporate donations and government grants, you have to ask whether they're a suitable group to be "representing" patients in such an influential way.

The fact that they're a charity for kids shouldn't stop them being funded by a membership base of parents.
 
Messages
15,786
Secondly one of their activities is crisis intervention. I guess this is negotiating when social services or mental health tries to take kids into psychiatric units or away from their parents.
Funny, people have claimed that AYME's medical advisor is the one trying to get their kids' ME diagnosis removed and replaced with a psychiatric diagnosis after she claims to have cured them. Then the uncooperative parents get threats or actions involving child protection services.
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
We haven't had anyone here to present the view of AYME. I don't know them but I thought I would try to think through what their viewpoint might be. OK, so really this is guesswork from me.
You really need to do a bit more research on AYME. They support CBT, GET and Esther Crawley's Lightning Process for children. I doubt they would be any help at all for parents and children who find themselves in a difficult situation with Social Services.
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
I don't think it is necessarily a bad thing that AYME don't support the release of PACE data. It's good to be clear where they stand and hopefully more patients become more aware of how far removed they are from understanding ME/CFS or acting in patients' best interests.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
A parliamentary committee looked at some of these issues around charities recently. Makes for quite jaw-dropping reading: http://www.telegraph.co.uk/news/pol...of-our-charities-are-nothing-of-the-sort.html

Whether you think charities should get this kind of grant support is a matter of opinion, but surely all 'charities' should be required to spell out how much they actually raise from the public on the front page of their website. AYME's figure would be pretty dismal.

Incidentally, I was glancing at the MEA's accounts for comparison and I think they raise much, much more of their income through donation/membership (though I'm no accountant).
 

Justin30

Senior Member
Messages
1,065
It dont like this one bit...AYME has people that have conflicts of interest as part of their board based on what I have read...on MEAction...sad to see a patient population especially children being inadequately represented based on the most current reports. Messed up actually...

Give up UK Health Authorities, Government, etc. The cats out of the bag...ME is real biological illness, havent you heard the news? Its time for you to cough up the data for the flawed PACE study! Appologize to the people and the families that have suffered from flawed research! Launch legal action against the people that created the study and manipulated data that became the basis for treatment around the world!

And finally allocate as much funding and resources as you can to Countries that are doing real research and maybe even do some of your own that doesnt include CBT and GET.

Bye for now...
 
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user9876

Senior Member
Messages
4,556
Secondly one of their activities is crisis intervention. I guess this is negotiating when social services or mental health tries to take kids into psychiatric units or away from their parents. We've all heard the horror stories so I think this is important work and once again they want to be free of controversy and on good terms with pediatric ME/CFS services and doctors. They can't avoid dealing with these people, who hold the power.

.

My experience of their 'help' in this area is being told to ring citizens advice. They seemed keen to help until Crawley's name was mentioned when the promises got dropped and the advice was to ring CAB.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
My experience of their 'help' in this area is being told to ring citizens advice. They seemed keen to help until Crawley's name was mentioned when the promises got dropped and the advice was to ring CAB.
Talk about conflict of interest!

Does anyone know if this would be within the remit of the Charities Commission to investigate?

Not suggesting you should do this, @user9876, but would Children in Need, for example, have made a grant if they were aware that the charity's own medical advisor was implicated in trying to remove children with ME from their parents.
 

user9876

Senior Member
Messages
4,556
Talk about conflict of interest!

Does anyone know if this would be within the remit of the Charities Commission to investigate?

Not suggesting you should do this, @user9876, but would Children in Need, for example, have made a grant if they were aware that the charity's own medical advisor was implicated in trying to remove children with ME from their parents.

To be clear the issue when we asked for help wasn't with Crawley but with a local paediatrician and CAMHS but my child was under Crawley's service who recommended the local paediatrician. At the time Crawley just went very quiet she was quoted as supporting child protection action so we could get services (which is complete crap) but the social worker was cherry picking statements for her report. Basically Crawley didn't want to be involved.

We got help from the Tymes trust in the end.

We had later issues with Crawley and removing an ME diagnosis because my child had been ill for too long. But at that point we had learned who to ask for help and so didn't bother with AYME.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Does anyone know if this would be within the remit of the Charities Commission to investigate?

Possibly. But there are something like 170,000 registered charities in the UK and the Charity Commission doesn't even have the manpower to enforce things like compliance with required documentation. I doubt they have the resources to go into that sort of investigative depth.
 

Yogi

Senior Member
Messages
1,132
We have 10 charities supporting us and it is not a surprise that AYME are against given Esther Crawley is their medical adviser.

In a way this is very good as Clark Ellis says that it clearly shows that they are not on the patient sides and it is clearfor all to see that they are sham charity. I do not understand what benefits their trustees get out of this charade

We need to ensure that all young people are aware of this and support Tymes trust instead and charities like this simply go into liquidation from lack of support..



Here is mark ellis twitter a/c. He claims his daughter has severe ME. It is very strange as I thought esther crawley states severe me that doesn't get better with CBT and GET is persistent refusal syndrome.

https://mobile.twitter.com/mark1ellis


He is a financial advisor at positive solutions.

https://uk.linkedin.com/in/mark-ellis-85136515

More background on his daughter Sophie and Mark Ellis.

http://www.thesun.co.uk/sol/homepag...tbreaking-victims-of-ME-and-fibromyalgia.html
 
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Yogi

Senior Member
Messages
1,132
What I do not understand is was Mark Ellis' daughter given

1.CBT ?
2.GET ?
3. LIGHTENING PROCESS?
4. Will she be in the Magenta trial?

....or is that abuse reserved for other people's children?
 

skipskip30

Senior Member
Messages
237
It does, doesn't it.

It's always surprising to see the fairly random way such things get decided. When you think that AYME gets nearly all its funding from a combination of corporate donations and government grants, you have to ask whether they're a suitable group to be "representing" patients in such an influential way.

From everything i saw while i was a member i think you are right in questioning their suitability. Its extra concerning when they represent children.