Monday, 13 January 2014

Synergising Research into ME


Welcome to IIMEC9 - the 9th Invest in ME International ME Conference 2014 in Westminster, London, UK, on 30th May 2014.

Today Invest in ME announce some of the speakers at the 2014 conference.

The key to resolving, treating and curing ME lies in biomedical research.

Healthcare staff need to be aware of the latest biomedical research into ME as well as the multiple symptoms exhibited by ME patients and of the possible treatments available and future research directions.


Benefits of attending Invest in ME 2014 Conference

o   Increase your understanding of diagnosis, treatment and management of ME

o   Explore current and future biomedical research into ME

o   Assess the role of immunological markers in ME

o   Learn about ongoing clinical trials using Rituximab to treat ME patients

o   Learn about inflammation in the CNS and its contribution to neurological disease

o   Learn about the function of the immune response in the gut

o   Share and exchange ideas with the leading practitioners in the field


Who should attend?

IIMEC9 will be of interest to:

o Specialists in ME (CFS)

o GPs with an interest in ME (CFS)

o Neurologists

o Immunologists

o Virologists

o Palliative care nurses

o Occupational Therapists

o Specialists in pain management

o Specialists in care of the chronically ill

o Community nurses

o All trainees in these disciplines

o ME Support groups and charities


Conference fee includes:

Entrance to the conference, lunch & refreshments, full conference documentation and certificate of accreditation (for professionals).


Confirmed Speakers:

Invest in ME are pleased to announce the following speakers at the conference -  

Professor Jonathan Edwards
  Emeritus Professor of Connective Tissue Medicine University College London (UCL), UK

Associate Professor Mady Hornig
  Center for Infection and Immunity (CII), Columbia University Mailman School of Public Health New York, USA

Professor Sonya Marshall-Gradisnik
  Associate Professor, Biochemistry, Griffith University, Australia

Professor Julia Newton
  Clinical Professor of Ageing and Medicine, Institute for Ageing and Health, Newcastle University and Honorary Consultant Physician, Royal Victoria Infirmary, UK

Dr James Baraniuk
  Professor of Medicine at Georgetown University Medical Centre, USA

Dr Ian Gibson 
  Former Dean of Biological Sciences, University of East Anglia

Additional speakers are expected to be announced shortly

The conference follows the Invest in ME Biomedical Researchinto ME 4 seminar which covers the major initiatives in ME research being performed and in which these speakers will also participate.

As the Invest in ME initiated and funded research becomes underway at UEA (gut microbiome) and UCL (rituximab clinical trial) the conference will reflect the research being performed and focus on synergizing the research elements from around the world to find cause and provide treatments for this disease.

Also present at the conference will be representatives of the European ME Alliance (EMEA) as the EMEA AGM takes place after the conference.

CPD Accreditation from the Royal colleges has been applied for and we hope to obtain the maximum credits for the conference, as in previous years.

How can we ensure ME research and patient care benefit from the latest thinking in ME/CFS and related areas of research?  What is the best way forward?

The Invest in ME conferences have attracted presenters and delegates from fifteen countries and our DVDs of the conferences have been distributed to over 20 countries in Europe, USA, Canada, Australia and New Zealand.

Conference Registration:

Full details of the conference can be found at this address - click here.

IiME are again offering a discounted rate for healthcare staff who attend in connection with a local ME Support Group. IiME welcome all professionals who are working with, or have an interest in, ME/CFS.

Should you have any further questions relating to the conference please contact us at 

We look forward to welcoming you to the conference,

Invest in ME

Friday, 3 January 2014

Bristol ME Event - “Exercise and ME/CFS – the evidence”

I received the following from Natalie Boulton of “Voicesfrom the Shadows”; the flyer mentioned in the text can be found here and a programme for the event here.

From Natalie -  

I would like to let people know about an evening event in Bristol “Exercise and ME/CFS - the evidence" on Feb 5th which I am organising with the Bristol North Fibro & ME/CFS Support Group. Since some charities only wish to publicise their own events it is proving rather difficult to let relevant people know about this event. However, since people from far, far away have made bookings, I realise that many people do very much appreciate the opportunity this event provides, if they know about it.

There is more information and a programme on the film website here - http://voicesfromtheshadowsfilm.co.uk/2013/bristol-event-feb-5th/   

Tickets - £10 - are available on the shop page - http://voicesfromtheshadowsfilm.co.uk/shop-dvds/

A flyer is attached below

The evening will include a short 30 min version of the film - the young ME patients' stories -   backed up by a presentation by Prof Mark VanNess about the research from the Workwell Foundation with Staci Stevens and Chris Snell, previously at the Pacific Fatigue Lab California. This work is very significant in that it objectively demonstrates the reality of the cardinal symptom of ME - post exertional malaise, or the post exertional exacerbation of symptoms which can prove so damaging to patients.  Their work counters assertions made by proponents of graded exercise and the PACE Trial that the fatigue and disability of CFS and ME is merely caused by deconditioning and that GET and CBT are the most effective treatment options for patients.

Dr Nigel Speight who speaks in the film will also explain some of the problems encountered by families and medical professionals when trying to help young patients.

I hope the event may be of interest to you and would be very glad of your help with letting other ME sufferers know about it. It is not only of relevance to patients, but will also be of use to relatives, carers and medical professionals. If you have any questions about it do please ask me.

Thanks.

With best wishes,
Natalie Boulton

Wednesday, 1 January 2014

Happy New Year!

A Very Happy New Year to readers of my blog!

C H Spurgeon’s Evening Devotional for 1st January

http://bible.christiansunite.com/Morning_and_Evening/chme0101.shtml

"We will be glad and rejoice in Thee."

Song of Solomon 1:4

We will be glad and rejoice in Thee. We will not open the gates of the year to the dolorous notes of the sackbut, but to the sweet strains of the harp of joy, and the high sounding cymbals of gladness. "O come, let us sing unto the Lord: let us make a joyful noise unto the rock of our salvation." We, the called and faithful and chosen, we will drive away our griefs, and set up our banners of confidence in the name of God. Let others lament over their troubles, we who have the sweetening tree to cast into Marah's bitter pool, with joy will magnify the Lord. Eternal Spirit, our effectual Comforter, we who are the temples in which Thou dwellest, will never cease from adoring and blessing the name of Jesus. We WILL, we are resolved about it, Jesus must have the crown of our heart's delight; we will not dishonour our Bridegroom by mourning in His presence. We are ordained to be the minstrels of the skies, let us rehearse our everlasting anthem before we sing it in the halls of the New Jerusalem. We will BE GLAD AND REJOICE: two words with one sense, double joy, blessedness upon blessedness. Need there be any limit to our rejoicing in the Lord even now? Do not men of grace find their Lord to be camphire and spikenard, calamus and cinnamon even now, and what better fragrance have they in heaven itself? We will be glad and rejoice IN THEE. That last word is the meat in the dish, the kernel of the nut, the soul of the text. What heavens are laid up in Jesus! What rivers of infinite bliss have their source, ay, and every drop of their fulness in Him! Since, O sweet Lord Jesus, Thou art the present portion of Thy people, favour us this year with such a sense of Thy preciousness, that from its first to its last day we may be glad and rejoice in Thee. Let January open with joy in the Lord, and December close with gladness in Jesus.


Another poem from “Echoes of Eternity”, a collection of Christian poems by Michael R Abbott; used with permission -

HAVE YOU BEEN?

Have you been to the manger at Bethlehem,
To see there the Saviour of men?
Have you, like the shepherds who went there of old,
Returned with rejoicing again?

Have you come, like the wise men who travelled from far,
To prostrate yourself at His feet?
Have you found in this Saviour the answer to sin,
Your need of forgiveness to meet?

Have you been to the cross where the dear Saviour hung,
To suffer and die in your place?
Have you felt for yourself the great power of His blood,
Imparting salvation and grace?

Have you been to the tomb, where the stone rolled away
Declares Him the Victor and Lord?
Do you long to tell others that Jesus is King,
That they might know blessing outpoured?



On Christmas Day there was an article about a severe ME sufferer in the Daily Mail called "'I've got the bones of a 100-year-old because I’ve been in bed for seven YEARS': 22-year-old with severe ME could break a rib by just sitting up too fast"; to read it, please click here.