(Not a recommendation) (UK) "Chronic Fatigue Syndrome Conference: Costs, challenges and practice"

T

Tom Kindlon

Senior Member (Voting Rights)
I know from an email that this is on July 17.

http://www.salford.ac.uk/onecpd/conferences/chronic-fatigue-syndrome-conference

Chronic Fatigue Syndrome Conference: Costs, challenges and practice
“Chronic Fatigue Syndrome (CFS) can cause profound, prolonged illness and disability, which has a substantial impact on people with CFS and their carers. Uncertainties about diagnosis and management, and a lack of clinical guidance for healthcare professionals, have exacerbated this impact.” – National Institute for Health and Care Excellence

An estimated 260,000 people in the UK suffer from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). A 2017 study by 2020health suggests that £542 million is spent by the UK health service on CFS/ME annually, with the overall cost of this condition to the UK economy reaching approximately £3.3 billion.

There is limited understanding of CFS/ME in frontline health services and in society. As a result NICE recently announced a full review of its guidelines on the diagnosis and management of CFS/ME.

Science is operating as it should, self-critical and open to revision, and there are several angles being explored in the studies of immune, metabolic, endocrine and nervous systems. However, it could be several years before there are any clearer answers that reliably inform the diagnosis, treatment and management of CFS/ME. In the meantime, there are large numbers of individuals facing the challenges of this condition with significant networks and services throughout the UK helping them along with the people who support them at home, in their communities and in education/work.

Join us for the Chronic Fatigue Syndrome Conference where high level speakers will discuss the costs of CFS/ME to individuals and to society as a whole, the impact of the condition on the individual and their carers and what is working to support individuals in practice.
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08:30

Registration, refreshments and networking

10:00

Opening remarks from the chair

Christine Parker, senior lecturer, University of Salford (Confirmed)

10:10

CFS/ME: The health scandal of our generation

David Butcher, chairman, The Optimum Health Clinic Foundation (Confirmed)

After sharing my personal journey with CFS/ME, I will examine the costs of CFS/ME to the UK economy, the issues and challenges.


  • My personal journey to full recovery of CFS/ME
  • CFS/ME in numbers
  • The cost to the UK economy
  • Extent of scandal
  • Need for research
10:40

An update on the research evidence for diagnosis and management


Dr Adrian Heald, ME/CFS Service, Salford Royal NHS Foundation Trust (Confirmed)

  • Issues around diagnosis and prognosis
  • Types/stages/severity and potential for recovery
11:10

Questions and discussion with speakers from this session

11:20

Refreshments and networking


11:50

Chronic Fatigue Recovery - A 21st Century Solution

Elaine Wilkins, CEO and Founder, The Chrysalis Effect CIC and CE Health (Confirmed)

This session rewrites the future for CFS patients. Out-moded paradigm of long waits and endless referrals is replaced by an instantly accessible recovery pathway.

  • Smashing the Obstacles - Recognising and overcoming the obstacles recovery
  • Filling the Gap- What’s missing from current treatment models?
  • Role Model Medicine – the super power in recovery
  • Harnessing Agile Delivery – ‘Making Recovery Accessible to All’ regardless of postcode
  • Ready for Take-off - NHS GP Pilots – Supporting our overstretched GPs to transforming the healthcare model for CFS patients
12:20

CFS/ME in young people: Impact on education and development

Alex Woore, co-ordination clinician and Jenny Morris, CFS/ME therapist, Manchester CFS/ME Service for Children and Young People (Confirmed)

CFS/ME can impact the outcome for a young person educationally, physically and emotionally. This session will consider how targeted intervention supports positive outcomes.

  • Impact of CFS/ME on social and emotional development
  • The challenge of maintaining an education with CFS/ME
12:50

Questions and discussion with speakers from this session

13:00

Lunch and networking

14:00

Service development: the patient voice

Deb Roberts, Clinical Nurse Specialist and Nurse Researcher in CFS/ME, Liverpool CFS Therapy Team (Confirmed)

  • The challenges and value of patient engagement in service transformation
  • The perspectives of the patient and their significant others
  • The impact of patient engagement on health outcomes
14:30

Supporting people in employment and facilitating returning to work

Paul Davey, Health and disability employment solutions (Confirmed)

  • The value of good work as part of rehab/recovery
  • How employers might support staff experiencing CFS/ME (e.g. accommodation in the workplace, managing stigma, confidentiality and disclosure)
  • What approaches did we find worked well?
  • What reasonable adjustments really do help?
  • How can approaches to CFS management and recovery, such as Pacing, be realistically supported by employers?
15:00

Interactive Panel Discussion:

This is an opportunity for delegates and speakers to reflect, expand upon and discuss a variety of talking points from across the day.

15:40

Closing remarks from the chair

Christine Parker, Senior Lecturer, University of Salford (Confirmed

15:45

Conference Close
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Learning outcomes

  • Hear about the costs of CFS/ME to individuals and to society as a whole
  • Discuss issues around diagnosis and prognosis
  • Assess different types/stages/severity of CFS/ME, and the potential for recovery
  • Understand the challenges of living with CFS/ME, and how this impacts the individual and their significant others
  • Consider how targeted intervention supports positive outcomes in children and young people
  • Examine the challenges and value of patient engagement in service transformation
  • Explore how employers might support staff experiencing CFS/ME
  • Identify how work and/or education can be a part of the rehabilitation process
  • Network with individuals and organisations across multiple sectors who are passionate about improving the lives of those experiencing CFS/ME
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I wonder who set this up? Looks quacky.

Paul Davey was a part of Action for ME's SEE ME project:

Paul recently completed delivery of Action for M.E.'s highly successful employment support service, for people with a diagnosis of M.E./ Chronic Fatigue Syndrome, and is now seeking to bring this specialist expertise to individuals, employers and support services.


https://www.actionforme.org.uk/living-with-me/managing-work/see-me-project/
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http://www.pauldavey.org.uk/about

His website says:

This holistic, biopsychosocial approach provides a facilitative framework for delivering realistic mechanisms for returning to, sustaining and progressing in work.
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Not sure there's any good evidence for that with regards to ME/CFS.

The Action for ME page talks about their 'remarkable results' for SEE ME, although they included no control group in their 'project' and it's far from clear that anyone gained anything from it. They say: "By developing and demonstrating good practices in integrated health and employment support for people with M.E., the project raised aspirations and helped individuals to achieve their goals in relation to employment." What evidence is there that is helped anyone achieve their employment goals?
 
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Christine Parker is from Jessica Bavinton's Vitality 360 (along with Sue Luscombe): http://vitality360.co.uk/fatigue-pain/about-us-2/about-us/our-team/

Bavinton is not an impressive human being. She was part of the old NICE committee, led development of GET for the PACE trial, was promoting the 30% 'back to normal' claim from PACE (seemingly without realising it was spin). She does a lot of work with insurance companies, and you occasionally find people talking about how they were forced to work with her 'treatment' programme by their insurance and left off even worse. She's also linked to the Vocational Rehabilitation Association which, surprise surprise, Action for ME were very happy to receive a prize from for their SEE ME project. I keep reading things that remind me how rubbish Action for ME are.

The blurb for this new meeting says: "Science is operating as it should, self-critical and open to revision, and there are several angles being explored in the studies of immune, metabolic, endocrine and nervous systems."

No. This is not science operating as it should. PACE is certainly not an example of people being self-critical and open to revision. This mess looks more like quacks trying to make money from desperate patients despite not having any good evidence that they have anything of value to offer them.
 
I'd forgotten how appalling Jessica Bavinton is.

Here she is on a forum evading comments and questions from patients while promoting PACE spin like:

Twelve months after starting in the trial, 3 out of 10 participants were within normal population ranges for both fatigue and function, following CBT and GET, which were approximately twice as many participants than after APT and SMC.
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https://www.talkhealthpartnership.com/forum/viewtopic.php?f=490&t=4557&start=30

Apparently while this was going on Action for ME were encouraging the moderators to delete critical posts from patients and lock threads.
 
Identify how work and/or education can be a part of the rehabilitation process
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Esther12 said:
Christine Parker is from Jessica Bavinton's Vitality 360 (along with Sue Luscombe): http://vitality360.co.uk/fatigue-pain/about-us-2/about-us/our-team/

Bavinton is not an impressive human being. She was part of the old NICE committee, led development of GET for the PACE trial, was promoting the 30% 'back to normal' claim from PACE (seemingly without realising it was spin). She does a lot of work with insurance companies, and you occasionally find people talking about how they were forced to work with her 'treatment' programme by their insurance and left off even worse. She's also linked to the Vocational Rehabilitation Association which, surprise surprise, Action for ME were very happy to receive a prize from for their SEE ME project. I keep reading things that remind me how rubbish Action for ME are.

The blurb for this new meeting says: "Science is operating as it should, self-critical and open to revision, and there are several angles being explored in the studies of immune, metabolic, endocrine and nervous systems."

No. This is not science operating as it should. PACE is certainly not an example of people being self-critical and open to revision. This mess looks more like quacks trying to make money from desperate patients despite not having any good evidence that they have anything of value to offer them.
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This is people positioning for a share of the IAPT pie .
 
Luther Blissett said:
http://cmft.nhs.uk/childrens-hospit...ding-specialist-services/cfs-me/meet-the-team

Information for Children and Young People Leaflet

http://cmft.nhs.uk/media/1413807/cfsme info patients.pdf
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@Action for M.E.
this is precisely the kind of approach that renders mild to moderate and moderate to severe in children and requires addressed as a matter of urgency before IAPT undoes the progress being made re GET and CBT
Can you respond with how you propose to help with the paradigm shift required?
thanks
 
Luther Blissett said:
Information for Children and Young People Leaflet
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This leaflet was done in 2010 and it says at the bottom that it was supposed to have been reviewed in 2012...........I'm guessing that they didn't bother because of the PACE trial (?)

It also cites AYME :
"
Who else can help?
There is a support organisation for young people with CFS/ME:
Association for Young People with ME (AYME).
Telephone:08451 23 23 89
(Monday to Friday from 10.00 am to 2.00 pm)
Web: www.ayme.org.uk"

the web link (as I mentioned elsewhere) just takes you to a blank page saying it is reserved for future use.

AfME have supposedly taken over AYMEs Children Services; just would have expected they might have told the relevant NHS services (it's not as if there are a lot of them).
 
SHOCKING.

I tried the Optimum Health Clinic years ago. The fact that they are presenting on the 'the health scandal of our generation' makes me feel sick. They are part of the scandal.

The Chrysalis Effect looks even worse. Elaine Wilkins has absolutely no qualifications, I believe she worked is sales (make-up I think) before she started this business. What makes her think that she can rewrite the future of treatment is beyond me.

Both are businesses out to make money. They're both angling for NHS contracts. No qualifications. The OHC is, in my opinion, a pyramid scheme.
 
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