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ME Trust: Could they help you?

Countrygirl

Senior Member
Messages
5,468
Location
UK
Although, of course, they have no magic bullet to offer, they do seem to be a compassionate organisation that offers sympathetic care and support to people with ME and are, in general, given that no real effective treatment is on offer anywhere on the NHS, far superior to the CFS/MUS clinics.

The clinician who lleads this was the doctor who cared for ME patients at the Christian Burrswood Nursing Home, and it did have an excellent reputation for its compassionate approach.

Maybe by supporting them they could become the replacement for the Fatigue/Mus clinics.




https://www.metrust.org.uk/howwehelp/

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The ME Trust supports people with ME/CFS ,their families and immediate community of carers with a highly experienced multi-disciplinary team.
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Dr Paul Worthley

We offer individually tailored whole person care. That means we seek to support you in whatever way is right for you as an individual physically, or emotionally or spiritually.

ME has a wide spectrum of severity and symptoms, and there is no one size fits all.

The team currently offers support in a variety of ways from phone, email or skype to home visits.
To make an enquiry about help from our clinical team, or if would you like to book a consultation, you can contact us in the following ways:

By Phone
0208 706 0036 (calls are charged at local rates). As a small organisation, we may not always have someone available to answer the phone immediately, but if you leave a message we will always get in touch with you.

By Email and Online
You can email Lyn Jane on l.jane@metrust.org.uk or use the contact form on the contact page.

We do our best to reply to all enquires within two working days.

Some information about our fees is below.

The Team
Every member of the team has experience in journeying alongside those with ME, acknowledging that each person has individual needs and stories as they endeavour to find health again. We do not offer a quick fix but are committed to helping each person to enable a fuller and richer way of life.

The team is led by Dr Paul Worthley, our ME Trust medical advisor and trustee, who has over 20 years’ experience of helping hundreds of people with ME/CFS at all levels of severity. He worked as resident Senior Physician at Burrswood Hospital for 24 years until 2014. He also ran an outpatient clinic there for people with ME/CFS and related illnesses until 2016. He pioneered a whole person and individually tailored approach to caring for people with this spectrum of disease. The value of his approach was confirmed by a Kent University study (PDF). Over many years, Dr Paul has learnt a lot both from patients, and by meeting the few medics who work in this field, and has helped hundreds of people with ME/CFS.

Physiotherapist, Sue Pople, with her background in working with people with long term illness, is particularly able to help with pain management and pacing. She knows that a foundation of true rest is the bedrock for ongoing health.

Counsellors, Ingrid Holmes and Linde Horseman, have a broad skill set and are able to work with whatever the patient brings into the therapeutic relationship. They aim to support and strengthen each individual to find a greater place of peace within and to develop greater resilience as they face the challenges that ME constantly brings on a daily basis.

Chaplain, Rev David Flagg, has long experience in working in Multi-Faith teams in the NHS and has a rich insight into the core spiritual needs at the heart of every human being, connecting with the vital essence of love, compassion and non-judgmental acceptance.

MORE ABOUT THE CLINICAL TEAM
Lyn can also arrange a short phone conversation with Hannah Clifton, our Director and Trust founder. Hannah brings a deep understanding of what it can be like to have to live with ME/CFS.

“The ME Trust has provided me with ongoing expert support with managing my ME where the NHS has been unable to. I’ve had regular access to an understanding GP who has given me sensible and helpful advice covering medication, pacing and symptom management. It’s such a relief to be able to talk to a clinician who actually understands the condition and who believes what I say. I’ve been able to ask questions that I simply wouldn’t feel comfortable raising with my own GP. This has helped me to cope on a day to day basis and has helped reduce the anxiety I have surrounding this condition. I’ve not had a miracle recovery but thanks to The ME Trust I now feel hopeful for the future where I had once only felt despair.”
J, East of England

Fees
Lyn can arrange an initial telephone call with Dr Paul Worthley to assess the best way forward, up to 30 minutes being free of charge. Subsequent telephone consultations with Dr Worthley, are charged at a rate of £20 per 15 minutes.

Dr Worthley can sometimes offer home visits, usually within the south/south-east of England. Depending on travel time, the cost is from £250.

Counselling or emotional support with Ingrid Holmes or Linde Horseman is £20 for up to half an hour. Further information is available here.

Spiritual accompaniment with Rev David Flagg is free for the first six sessions.

A physiotherapy consultation with Sue Pople, by phone, is £20 for a 15 minute call. A home visit, usually within the south/south-east of England, would be from £180 .

If you are in financial need please enquire about bursary support.

We welcome donations to fund bursaries. Donate to help someone with M.E.

Our vision for the future includes offering venues for face to face outpatient consultations, and provision of inpatient care.

The M.E. Trust aims to work with the NHS to improve facilities for people with ME/CFS.

“This model of care is ideal for the treatment of people with ME/CFS. The service should be expanded and a centre of excellence established, providing management support for people with ME/CFS.
Dr Luis Nacul, Clinical Senior Lecturer London School of Hygiene and Tropical Medicine], Director CURE-ME, Principal Investigator UK CFS/ME Biobank
 

Countrygirl

Senior Member
Messages
5,468
Location
UK
Thanks for posting @Countrygirl This is a much more sensible approach. I might offer to distribute flyers for them.

It would be good if we could drum up support for them and enable them to replace the Fatigue/MUS clinics.

They may not have a magic pill, but care, support, compassion and the fact that the patient is believed and treated with respect goes a long, long way and is a massive improvement compared to what is dished out by the fatigue clinics.
 
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boombachi

Senior Member
Messages
392
Location
Hampshire, UK
Not claiming to have a magic pill is in itself more helpful than offering false hope. I have emailed them and offered to leaflet drop as I live in the south where they offer services. Commissioners are looking to cut funding wherever they can at the moment and where I live the cfs clinics are now just a pathway in IAPT.