Wednesday, 23 October 2019

MEA Press Release: Vital new research could lay bare the cause of one of world’s cruellest illnesses

For immediate release: By John Siddle, PR Manager, ME Association. 

The ME Association announces three new research grants into an incurable disease that affects 250,000 Brits

Vital research funding that could lay bare the cause of one of the world’s cruellest illnesses can today be announced by the ME Association.

The UK charity is proud to reveal it is funding three new projects to help solve the mysteries of myalgic encephalomyelitis – also known as chronic fatigue syndrome – and how it is treated.

Manifesting as unrelenting exhaustion, profound pain, memory difficulties and worsened mobility, ME is destroying the lives of 250,000 people in the UK, including children and teenagers.

One in four are so severely affected that they are rendered housebound or bedbound – with some even reliant on tube feeding. Sufferers are often confined to their beds, unable to walk, and need help even to shower – an action that could then lay them low for hours, or even days.

There is no known cure – and worse still, there remain vast misconceptions and ignorance surrounding the illness – even in medical circles.

Today, campaigning charity The ME Association can announce a new tranche of funding totalling almost £200,000 through its Ramsay Research Fund.

The charity – which relies solely on donations and membership fees – has already invested more than a million pounds in biomedical research.

It considers quality research to be a key priority as it offers the best hope for better understanding, improved diagnosis and treatment.

ME Association Medical adviser, Dr Charles Shepherd, said:

“The ME Association is delighted to announce that our Ramsay Research Fund has been able to make three major research grants totalling nearly £200,000.

“All three projects constitute major steps forward in helping to understand the underlying cause of ME, the search for a diagnostic biomarker, and the provision of more effective management – especially during the crucial early stages of this illness.

“Thanks must go to our many loyal supporters and fundraisers who have been raising money for medical research into the cause and treatment of ME.”

Grant One: The UK ME/CFS Biobank (£99,766)

The world-leading ME/CFS Biobank (UKMEB) is the only one of its kind in the UK. Here, the analysis of blood samples could reveal crucial biomarkers to provide a deeper understanding of what causes ME, and how it could be accurately diagnosed and treated.

The project, led and managed by the Biobank team at the London School of Hygiene & Tropical Medicine, is funded through the ME Association’s Ramsay Research Fund.

This new ME Association funding will sustain and allow the Biobank to expand over the next two years and ensure a steady supply of blood samples to ME researchers around the world.

Jack Butterworth, a Project Manager at the Biobank, said:

“Over the past two years we have released samples to six research institutions in the UK alone, and many more in Europe, South America, Asia and the USA.

“The new, two-year award will build on that success, enabling further releases and the replenishment of depleted samples.

“The award will also enable further communications and fundraising projects, raising the Biobank’s income and reducing its reliance on grant funding.

“The funding will also allow the team to continue to work to develop biobanks elsewhere in the world, using protocols that are harmonised with the UKMEB’s. Exciting work is already underway in the USA, Canada and Australia.

“The UKMEB continues to be an example to biobanks in ME/CFS and in other fields and has published its work in peer-reviewed journals and presented at major conferences.”

* For more information about the UKMEB visit their website.

Grant Two: Dr Karl Morten and the University of Oxford (£69,150)

The ME Association is delighted to announce it has granted vital funding to Dr Karl Morten and colleagues at the University of Oxford, who are investigating blood abnormalities in ME patients.

The funding will enable scientists to continue examining a link between blood plasma abnormalities and dysfunctional mitochondrial energy production in ME patients.

This grant will also help to bring in more Oxford researchers from various disciplines and create a Centre of Excellence for ME Research in Oxford.

Dr Karl Morten said:

“We are extremely grateful to the ME Association for providing funding for our new 12-month project exploring the plasma factors in ME/CFS and their impact on mitochondrial function.

“This study will compare ME/CFS patients with patients diagnosed with other fatigue-inducing conditions to look at changes in mitochondrial dynamics.”

Grant three: Dr Keith Geraghty and the University of Manchester (£25,000)

The third grant goes to Dr Keith Geraghty and colleagues at the University of Manchester, where it will be used to analyse what happens to ME patients in the crucial time between the onset of their symptoms and a diagnosis being made. It is the first-time research in this area has been commissioned on such a level.

Dr Shepherd said:

“This is a key part of the patient journey where we know that there are serious problems in both obtaining an early and accurate diagnosis, and then being given appropriate advice on management.”

The results will also be fed into the development of the new NICE (The National Institute for Health and Care Excellence) clinical guideline on the diagnosis and management of ME/CFS.

Dr Geraghty said:

“ME is a disabling condition that greatly impacts the lives of sufferers. Many report problems getting an early diagnosis and appropriate medical care.

“We found almost no research on the ‘diagnosis of ME/CFS’, specifically how long it takes patients to get a diagnosis in the UK and the process patients go through to get a diagnosis.

“We want to explore this topic to better inform clinical practice and guidelines for treatment.”

Why funding The ME Association is vital and how you can help

Less than £1 is spent each year per person suffering from ME by the Government and there is a chronic lack of funding for medical research. Many doctors still don’t know how to diagnose or manage the condition.

A parliamentary debate last year was told how people with ME are six times more likely to commit suicide. We desperately need to learn more about the disease to improve diagnosis and develop effective treatments.

Research grants are made by the ME Association from funds generated by donations and fundraising drives.

Tuesday, 15 October 2019

Make ME Visible Campaign – Invisible Illness Week 2019

From the ME Association website – 

Make ME Visible Campaign – Invisible Illness Week 2019 | 14 October 2019

Pippa Stacey, Social Media Manager, ME Association.

Today marks the beginning of Invisible Illness Week 2019, a week dedicated to highlighting issues faced by people with less visible disabilities.

We know that for many, but not all, people with M.E, the symptoms and challenges they face on a daily basis are not easily seen by others.

Those mildly affected or who are experiencing a ‘good day’, may look like any other non-disabled person if they’re in public. However, in private, they’ll often be much more unwell and in need of assistance.

For those with more severe forms of the condition – who are more visibly unwell more of the time, confined to home or bed, who use disability aids, rely on carers or support workers, need help to move around or medical equipment – there seems less reason to doubt M.E. is visible.

Either way, many people will likely agree that the true nature of M.E. often goes unseen by those who are not directly affected by it.

Many people with the condition are excluded from education and employment. They are prevented from enjoying a typical social life, which can add to the isolation and prevent their struggles from being communicated with others.

We want to utilise Invisible Illness Week 2019 to help #MakeMEVisible, and we’re encouraging you to do the same. As well as sharing resources and conversation starters, we’d like you to tell us how you raise awareness and help to make M.E. visible.

Perhaps you write blog posts or poetry or use photography or other creative skills. Maybe you fundraise for charity or advocate to support the cause. Even things like using word of mouth to help educate others, supporting petitions and surveys, being a member of a charity, or engaging with social media posts etc., all contribute.

We’d love to see posts using the hashtag #MakeMEVisible.

Share extracts from your personal story and show how you’re helping make our invisible suffering more visible to wider society.

We’ll be sharing some of our favourites throughout the week!

We’ll also be asking for thoughts and ideas on how we can make M.E. more visible on a wider scale, too.

Your feedback is invaluable and may well help to shape the direction our advocacy takes in the future.

So, make sure you’re following the ME Association on Facebook, Twitter and Instagram, and please get involved. We’re looking forward to hearing from you!

Friday, 11 October 2019

Whom He did predestinate, them He also called

C H Spurgeon's Evening Devotional for 11th October

"Whom He did predestinate, them He also called."

Romans 8:30

In the second epistle to Timothy, first chapter, and ninth verse, are these words-"Who hath saved us, and called us with an holy calling." Now, here is a touchstone by which we may try our calling. It is "an holy calling, not according to our works, but according to his own purpose and grace." This calling forbids all trust in our own doings, and conducts us to Christ alone for salvation, but it afterwards purges us from dead works to serve the living and true God. As He that hath called you is holy, so must you be holy. If you are living in sin, you are not called, but if you are truly Christ's, you can say, "Nothing pains me so much as sin; I desire to be rid of it; Lord, help me to be holy." Is this the panting of thy heart? Is this the tenor of thy life towards God, and His divine will? Again, in Philippians, 3:13, 14, we are told of "The high calling of God in Christ Jesus." Is then your calling a high calling? Has it ennobled your heart, and set it upon heavenly things? Has it elevated your hopes, your tastes, your desires? Has it upraised the constant tenor of your life, so that you spend it with God and for God? Another test we find in Hebrews 3:1-"Partakers of the heavenly calling." Heavenly calling means a call from heaven. If man alone call thee, thou art uncalled. Is thy calling of God? Is it a call to heaven as well as from heaven? Unless thou art a stranger here, and heaven thy home, thou hast not been called with a heavenly calling; for those who have been so called, declare that they look for a city which hath foundations, whose builder and maker is God, and they themselves are strangers and pilgrims upon the earth. Is thy calling thus holy, high, heavenly? Then, beloved, thou hast been called of God, for such is the calling wherewith God doth call His people.

Wednesday, 2 October 2019

The Third Annual Community Symposium on the Molecular Basis of ME/CFS

The Third Annual Community Symposium on the Molecular Basis of ME/CFS, sponsored by the Open Medicine Foundation, took place on September 7, 2019 at Stanford University.

All of the individual talks are now available to watch on YouTube –

Individual talks – 

01 Ron Davis – Opening Remarks 

02 Linda Tannenbaum and Chris Armstrong – Welcome 

03 Janet Dafoe – Greetings 

04 Ashley Haugen – Symposium Logistics 

05 Raeka Aiyar – Revolutionizing Disease Research with Stem Cells 

06 Robert Harrington – Video from the Stanford Chair of Medicine 

07 Maureen Hanson – Thoughts and Data about ME/CFS 

08 Alain Moreau – Let’s Talk About You and ME 

09 Oystein Fluge – Lessons from clinical trials in ME/CFS 

10 Q & A Panel Discussion – Morning Speakers 

11 Ron Tompkins – OMF ME/CFS Collaboration at the Harvard Affiliated Hospitals 

12 Jonas Bergquist – A short video update 

13 Juan Santiago – High-Resolution and High-Throughput Quantification of RBC Deformability 

14 Mike Snyder – Big Data, Wearables, and Health 

15 Robert Phair – Metabolic Traps in ME/CFS 

16 Ron Davis – What’s Next? 

17 Q & A Panel Discussion – Afternoon Speakers 

18 Ron Davis – Closing Remarks 

Tuesday, 1 October 2019

The PACE trial - Series Highlights

The PACE trial - Series Highlights

MPs, experts and patients discuss the harm and flaws of the controversial trial of Graded Exercise on ME patients. “One of the biggest scandals of the 21st century” Carol Monaghan MP.

Children with ME – Highlights

Highlights (~1 min) of the Children with ME video. 1 in 5 parents face child protection proceedings, in extreme cases parental rights have been removed. MPs, experts, charities and patients discuss some of the reasons this is happening and the impact it has had.

Watch the series –