UNREST screening and reception at the Speaker's House, House of Commons

[charles shepherd]

There are other MPs who should be on the list - we will update this in due course

Joanna Cherry SNP MP was also there - spotted by one of our members on one of the photos!

CS

 

[Demepivo]

Mea culpa - you are quite right!

So thanks for spotting this important omission

I met Sarah at the do and will ask Russ if we can add these names to the 'thank you' list on the MEA website summary

CS

Thanks to you for all the great work you & colleagues have done in recent months. It is appreciated even if we are all a bit curmudgeonly on this forum sometimes

Also Sarah & Andy Reed would make extremely good trustees if the MEA is on the look out for any. Both are well connected, knowledgeable popular people. Only downside is I'm sure every community group going asks them to join and they might have to refuse!

 

[charles shepherd]

In relation to the 3 key actions that need to occur in the UK -

These are the key action points from my 10 minute presentation

1 EDUCATION ON ME/CFS FOR ALL HEALTH PROFESSIONALS - AND OTHERS WHO NEED TO KNOW

This needs to occur at all levels in the medical hierarchy - undergraduate, postgraduate, clinicians, researchers - as well as for other health professionals, social workers, teachers etc

As far as medics are concerned, people need an early and accurate diagnosis - and to be managed according to individual circumstances. Long delays in making a diagnosis and misdiagnosis, as currently occur, are unacceptable.

Forward ME Group are very active here and have met with representatives from the GMC, Royal College of General Practitioners, Royal College of Child Health and Paediatrics, Chief Social Worker for Children and Families, DWP Benefit assessors etc to try and get the message across

It's not costly - it just needs the will to do something from the medical establishment and the Department of Health

2 THE NEED FOR A PROPERLY FUNDED UK BIOMEDICAL RESEARCH STRATEGY

We need - as identified in the Chief Medical Officer's Working Group Report almost 20 years ago - a co-ordinated research strategy that includes commissioned and directed research (ie state funded research)

Charity sector is doing an amazing job here in the UK by funding biomedical research (eg ME Biobank at Royal Free Hospital, raising over £400K for a clinical trial of rituximab) and helping to establish emerging centres of excellence in London (ie Biobank), Newcastle, Norwich and Oxford. But this cannot cannot just be left to ME/CFS charities to organise and fund.

We also need to follow suit, and link in with, the new National Institutes of Health initiatives to set up multidisciplinary and multicentres research centres in the USA

3 SAFE EFFECTIVE MANAGEMENT THAT IS AVAILABLE TO ALL - REGARDLESS OF AGE, SEVERITY AND LOCATION
NICE guideline review now sorted - mainly due to patient and charity pressure - but we will probably have to put up with the current NICE guideline, which is not fit for purpose, till publication of a new NICE guideline in October 2020

The negative side to the NHS hospital-based referral services/clinics for ME/CFS needs to be addressed:

- virtually no hospital based referral services in Northern Ireland, Scotland and Wales
- domiciliary services and in patient facilities almost non existent for the severely affected
- 25% in all- very few services for children and adolescents
- over simplistic 'one size fits all' approach to treatment, based on CBT and GET as recommended by NICE, has to end


Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[Yogi]

There is an MEA write up of the screening on their website by Charles Shepherd.

http://www.meassociation.org.uk/201...ch-genuine-interest-in-mecfs-26-october-2017/



The MEA did well in putting on the event but they failed to mention other important people involved like the Unrest team, ME Action Network UK, Sarah & Andy Reed who lobbied MPs and all the patients who spoke to their representatives (IMO).

That's interesting. I am sure Charles Shepherd has seen this but has still not responded to the 'elephant in the room'. This is the key problem for people in the UK. The MEA and Charles Shepherd continues to validate and condone Esther Crawley's actions.
He has not condemned any of her actions or behaviour.

I will not hold my breath for a response as he usually ignores these important issues.

http://forums.phoenixrising.me/inde...ng-at-better-science-better-data-event.55443/

 

[Sasha]

- over simplistic 'one size fits all' approach to treatment, based on CBT and GET as recommended by NICE, has to end

That seems an excellent set of points but I'd take issue with this one. The problem with CBT/GET isn't that they're 'one size fits all'. It's that they've been shown - in PACE, the 'definitive' trial - not to work for ME, and survey data, including the MEA's, indicates that GET causes harm.

Not only should they not be applied to all with ME/CFS, but they shouldn't be applied to any of us.

 

[CFSTheBear]

That's interesting. I am sure Charles Shepherd has seen this but has still not responded to the 'elephant in the room'. This is the key problem for people in the UK. The MEA and Charles Shepherd continues to validate and condone Esther Crawley's actions.
He has not condemned any of her actions or behaviour.

I will not hold my breath for a response as he usually ignores these important issues.

http://forums.phoenixrising.me/inde...ng-at-better-science-better-data-event.55443/

He's literally addressed it in this thread.

 

[Yogi]

He's literally addressed it in this thread.

As you know, it has not been addressed.

 

[CFSTheBear]

As you know, it has not been addressed.

Oh - you're referring to Esther Crawley instead? Right.

 

[charles shepherd]

That seems an excellent set of points but I'd take issue with this one. The problem with CBT/GET isn't that they're 'one size fits all'. It's that they've been shown - in PACE, the 'definitive' trial - not to work for ME, and survey data, including the MEA's, indicates that GET causes harm.

Not only should they not be applied to all with ME/CFS, but they shouldn't be applied to any of us.

Fully agree with you and I did make this very important point as well!

CS

 

[NelliePledge]

In relation to the 3 key actions that need to occur in the UK -

These are the key action points from my 10 minute presentation

1 EDUCATION ON ME/CFS FOR ALL HEALTH PROFESSIONALS - AND OTHERS WHO NEED TO KNOW

This needs to occur at all levels in the medical hierarchy - undergraduate, postgraduate, clinicians, researchers - as well as for other health professionals, social workers, teachers etc

As far as medics are concerned, people need an early and accurate diagnosis - and to be managed according to individual circumstances. Long delays in making a diagnosis and misdiagnosis, as currently occur, are unacceptable.

Forward ME Group are very active here and have met with representatives from the GMC, Royal College of General Practitioners, Royal College of Child Health and Paediatrics, Chief Social Worker for Children and Families, DWP Benefit assessors etc to try and get the message across

It's not costly - it just needs the will to do something from the medical establishment and the Department of Health

2 THE NEED FOR A PROPERLY FUNDED UK BIOMEDICAL RESEARCH STRATEGY

We need - as identified in the Chief Medical Officer's Working Group Report almost 20 years ago - a co-ordinated research strategy that includes commissioned and directed research (ie state funded research)

Charity sector is doing an amazing job here in the UK by funding biomedical research (eg ME Biobank at Royal Free Hospital, raising over £400K for a clinical trial of rituximab) and helping to establish emerging centres of excellence in London (ie Biobank), Newcastle, Norwich and Oxford. But this cannot cannot just be left to ME/CFS charities to organise and fund.

We also need to follow suit, and link in with, the new National Institutes of Health initiatives to set up multidisciplinary and multicentres research centres in the USA

3 SAFE EFFECTIVE MANAGEMENT THAT IS AVAILABLE TO ALL - REGARDLESS OF AGE, SEVERITY AND LOCATION
NICE guideline review now sorted - mainly due to patient and charity pressure - but we will probably have to put up with the current NICE guideline, which is not fit for purpose, till publication of a new NICE guideline in October 2020

The negative side to the NHS hospital-based referral services/clinics for ME/CFS needs to be addressed:

- virtually no hospital based referral services in Northern Ireland, Scotland and Wales
- domiciliary services and in patient facilities almost non existent for the severely affected
- 25% in all- very few services for children and adolescents
- over simplistic 'one size fits all' approach to treatment, based on CBT and GET as recommended by NICE, has to end


Dr Charles Shepherd
Hon Medical Adviser, MEA

Thanks @charles shepherd i will use this as aide memoire when I meet my MP

 

[charles shepherd]

Thanks @charles shepherd i will use this as aide memoire when I meet my MP

Did he/she come to the parliamentary screening?

CS

 

[NelliePledge]

Did he/she come to the parliamentary screening?

CS

Nope Anna Soubry.

 

[Jenny TipsforME]

Also Sarah & Andy Reed would make extremely good trustees if the MEA is on the look out for any.

Sarah Reed of ME Action Network UK has done great work on this, no one steal her please

Working together is great and keeping on top of appropriate thank yous helps (though everyone thinks they don’t do it for the thank you!)

 

[Cinders66]

Just seen this thread. All MPs were invited. It wasn’t reliant on the EDM 271 campaign emails though they did also mention it.

40 MPs attended which I believe works out as 1 in 16 of all MPs, which is a great result A list of who attended does exist.

Invited by who and when? Was it RSVP? I didn't see this or know about the event until it went on the news and I look at a lot of the Facebook and PR pages regularly and even when info was being put out by MEA it didn't say all MPs has been invited, it said those who'd expressed previous interest and also #MEaction had asked some and a hundred or so figure was given although perhaps that was their own activity...

It is a shame that just before MPs showed interest again that the APPG folded which surely would have been the natural place to take further action with MPs.

Anyway if that percentage turned up on a day when there was an urgent debate called elsewhere that's good and it's good some MPs are tweeting that this is an area requiring action. Let's hope momentum continues this time, I guess with the situation in America and research showing irrefutable evidence it's never been a better time to say uk needs to step up.

 

[shannah]

@charles shepherd

I know the event is a resounding success but I'm wondering if anyone has heard specific feedback from the individual MPs ? If so, can you share what that is and if it's posted somewhere or who I could connect with to talk to about it.

We're dong the same thing in Canada and could benefit from hearing their thoughts.

Thanks

 

[Jenny TipsforME]

Invited by who and when?

The people I saw discussing who was invited were from Shella Films and MEActNet UK. I don’t know exact dates of the invitations, but an originally more targeted list was expanded to include all MPs. Presumably this can only be a good thing?

Shella Films has a team of people including people focusing on impact (ie beyond the film production stage) https://www.unrest.film/team

 

[Yogi]

That's interesting. I am sure Charles Shepherd has seen this but has still not responded to the 'elephant in the room'. This is the key problem for people in the UK. The MEA and Charles Shepherd continues to validate and condone Esther Crawley's actions.
He has not condemned any of her actions or behaviour.

I will not hold my breath for a response as he usually ignores these important issues.

http://forums.phoenixrising.me/inde...ng-at-better-science-better-data-event.55443/

As suspected and expected Charles Shepherd has ignored my post. Why is Charles Shepherd not challenging Esther Crawley smearing all ME patients?

I will in future do a longer report into Charles Shepherd/MEA and why he condones and not condemn Esther Crawley. This is more evidence for my future post.