Wednesday, 25 December 2019

Seasons Greetings 2019

A Very Happy Christmas to readers of my blog, your families and friends.

From the Bible –

2 Corinthians 8 v 9: “For ye know the grace of our Lord Jesus Christ, that, though He was rich, yet for your sakes He became poor, that ye through His poverty might be rich.”


A Christmas Carol –

Thou Who wast rich beyond all splendour,
All for love’s sake becamest poor;
Thrones for a manger didst surrender,
Sapphire-paved courts for stable floor.
Thou Who wast rich beyond all splendour,
All for love’s sake becamest poor.

Thou Who art God beyond all praising,
All for love’s sake becamest man;
Stooping so low, but sinners raising
Heav’nwards by Thine eternal plan.
Thou Who art God beyond all praising,
All for love’s sake becamest man.

Thou Who art love beyond all telling,
Saviour and King, we worship Thee.
Emmanuel, within us dwelling,
Make us what Thou wouldst have us be.
Thou Who art love, beyond all telling,
Saviour and King, we worship Thee.

Frank Houghton, 1894-1972.


C H Spurgeon's Cheque Book Of The Bank Of Faith Daily Devotional for 25th December


He Came; He Is Coming

This same Jesus, which is taken up from you into heaven, shall so come in like manner as ye have seen him go into heaven. (Acts 1:11)

Many are celebrating our Lord's first coming this day; let us turn our thoughts to the promise of His second coming. This is as sure as the first advent and derives a great measure of its certainty from it. He who came as a lowly man to serve will assuredly come to take the reward of His service. He who came to suffer will not be slow in coming to reign.

This is our glorious hope, for we shall share His joy. Today we are in our concealment and humiliation, even as He was while here below; but when He cometh it will be our manifestation, even as it will be His revelation. Dead saints shall live at His appearing. The slandered and despised shall shine forth as the sun in the kingdom of their Father. Then shall the saints appear as kings and priests, and the days of their mourning shall be ended. The long rest and inconceivable splendour of the millennial reign will be an abundant recompense for the ages of witnessing and warring.

Oh, that the Lord would come! He is coming! He is on the road and traveling quickly. The sound of His approach should be as music to our hearts! Ring out, ye bells of hope!


“For God so loved the world, that He gave His only begotten Son, 
that whosoever believeth in Him should not perish, 
but have everlasting life” (John 3 v 16).


Saturday, 21 December 2019

A Holiday Message from Dr Ron Davis, 21 December 2019

Dr Ron Davis shares an update on research at the OMF-funded ME/CFS Collaborative Research Center at the Stanford Genome Technology Center. He shares holiday greetings and hope with the entire ME/CFS community.




Wednesday, 11 December 2019

Nanoneedle update: finding what's in the blood

https://forums.phoenixrising.me/threads/nanoneedle-update-finding-whats-in-the-blood.78592/

By Janet Dafoe

10 December 2019

There are a lot of various threads and tweets about this so I asked Ron to clarify where the research is at and what the plans are. As for everything else, this has gone a lot slower than it could have if he'd had more funding. The fact that he's gotten this far i totally due to patients' contributions to Open Medicine Foundation and to Stanford's ME/CFS Collaborative Research Center.

From Ron:

As you know, we have found that there is something in patients' plasma that is largely responsible for the signal that we see in the nanoneedle assay. We have some preliminary results using filtration that indicate that the major plasma component is fairly large, suggesting that it is not a cytokine.

We would like to identify what the component, or components, are that causes this signal, which could give us good insight into what's happening with the patients.

To conduct these experiments, we will need to fractionate the plasma using a variety of techniques, such as size fractionation. To fractionate means to divide the plasma up into multiple components based on various parameters. For example, to fractionate by size means to separate the plasma into 10 to 100 different parts, increasing in size.

We then need to run all these fractions in the nanoneedle at the same time, using the same blood sample. This is important, because if we run them one or two at a time there could be differences that are due to the different runs, rather than differences in the sample itself.

Currently, we are relying on a commercial instrument, costing $30,000, that is only capable of running 2 nanoneedle chip samples per day. Also, the sample needs to be run within 24 hours of the blood collection. Therefore, using the current machine, we would have to get new blood samples every day. We can't have the same patient come back every day and we can't use lots of different patients for different fractions, because people differ and this is just too much variance to yield anything useful.

What is now necessary is to fabricate a new electronic control system that can collect the data from the nanoneedle allowing it to collect data from up to 100 chips simultaneously. That way, all the fractions from the blood sample of one patient can be run simultaneously. Rahim Esfandyarpour, who developed the nanoneedle, has been working on this.

However, since Rahim has taken a professorship at UC Irvine, he has had to set up his whole new operation, get new students, and train everyone. He has been coming up to Stanford and collaborating with me every week. He has submitted a grant to NIH for this project. Meanwhile, he has been funded by OMF to pursue this new machine and to make new chips. He has now delivered a large new batch of chips.

We are now able to use the new chips to test various drugs, and we will use them in the new machine for fractionated plasma as soon as:

1. We have the new machine working
2. We have developed the fractionation method(s)
3. We have the new chips working with the new machine
4. We have solved all the problems that come up in the process

The current machine that runs 2 samples and collects the data from the nanoneedle costs $30,000 to buy. We don't need all the versatility of this commercial instrument. The machine that Rahim is developing will run up to 100 samples and will cost a few hundred dollars.

We are working as fast as we can to get this into operation.

I hope this clarifies some of your questions.

Ron Davis

Monday, 2 December 2019

UK Charity Pledges £500,000 for Research into ME in Norwich Research Park

Press Release from Invest in ME Research

http://www.investinme.org/IIMER-PR-20191201.shtml

for Immediate Release

UK Charity Pledges £500,000 for Research into ME in Norwich Research Park

UK Charity Invest in ME Research is pledging £500,000 for continued research into the disease myalgic encephalomyelitis (ME or ME/CFS) in Norwich Research Park, UK (NRP).

This major investment builds on the foundations already made for a UK/European Centre of Excellence for ME research hub in Norwich Research Park.

The pledge covers joint funding of a PhD position in partnership with University of East Anglia and over 70% of the required funding for a clinical trial of Faecal Microbiota Transplantation (FMT) being performed alongside other high-quality biomedical research at the Quadram Institute (QI).

QI’s world-class facility has seen four PhDs already employed on research into ME, focusing specifically on the gut microbiota and links to ME.

Invest in ME Research Chairman Kathleen McCall said: “This is a massive undertaking for a small charity but it underlines our confidence in the quality and direction of research at Quadram Institute. This research offers an opportunity to test a new form of treatment for ME in well-designed clinical trial. On top of the other initiatives being created in partnership with QI we believe this has the potential to change the face of research into this disease.”

Professor Simon Carding, Head of Gut Microbes and Health Research Programme at Quadram Institute Bioscience said: “We are incredibly grateful for the ongoing support from Invest in ME Research and their supporters. We are very excited at the prospect of undertaking the FMT clinical trial, as part of our ongoing investigations into the links between ME and the gut microbiome.”

This research news comes after recent meetings of the European ME Research Group (EMERG) and European ME Clinicians Council (EMECC) in which QI and UEA played major roles and which will form European collaborations and coordination of research into ME and clinical expertise development for this disease.

The continuing and developing research in Norwich Research Park holds out great hope for the future for ME patients and their families.

ME commonly presents with hugely diverse and debilitating symptoms including post-exertional malaise, unrefreshing sleep, cognitive dysfunction and widespread pain. ME has been estimated to affect around 250,000 people in the UK and direct and indirect economic costs have been estimated in the USA to be $20 billion annually. The severity of symptoms varies. Around 25% of sufferers may be classed as severely affected - often bed bound at some point in their lives with periods of relapse and remission common and only 6% returning to full health.

The pledge brings to five the number of PhD positions that the charity has funded/part-funded.

***ENDS***

Notes for editors

About Invest in ME Research

Invest in ME Research (charity nr 1153730) is an independent UK charity finding, funding and facilitating biomedical research into ME.

Invest in ME Research is run by volunteers - patients or parents of children with ME - with no paid staff. Overheads are kept to a minimum to enable all funds raised to go to promoting education of, and facilitating and funding biomedical research into ME. The charity organises an annual International ME Conference Week in London which includes a two day research Colloquium, young/early career researcher conference and a public international conference that regularly has delegates from twenty countries attending.

The charity's efforts are on developing the Centre of Excellence for ME to maintain a strategy of high-quality biomedical research into the disease and encouraging European collaboration in research and development of clinical expertise.

For more information visit www.investinme.org/pr01-Dec19

Contact details [Chairman Kathleen McCall, Invest in ME Research, PO BOX 561, Eastleigh SO50 0GQ, UK email: info@investinme.org

About the Quadram Institute

The Quadram Institute (quadram.ac.uk) is an interdisciplinary research centre at the forefront of a new era of food and health research. It brings together researchers and clinicians under one roof and houses one of Europe’s largest endoscopy units and a clinical research facility.

Based on the Norwich Research Park, The Quadram Institute is a partnership between Quadram Institute Bioscience, the Norfolk and Norwich University Hospitals NHS Foundation Trust, the University of East Anglia and the Biotechnology and Biological Sciences Research Council (BBSRC).

Its mission is to deliver healthier lives through innovation in gut health, microbiology and food and its vision is to understand how food and microbes interact to promote health and prevent disease.

Four interconnected research themes in Quadram Institute Bioscience deliver a pipeline of research in plants, microbes, food and health: microbes in the food chain; the gut and the microbiome; food innovation and population health.

For media enquiries please contact:
Andrew Chapple, andrew.chapple@quadram.ac.uk, 01603 251490, 07713087883

About University of East Anglia

The University of East Anglia (UEA) is a UK Top 25 university and is ranked in the top 50 globally for research citations. Known for its world-leading research and good student experience, it was awarded Gold in the Teaching Excellence Framework and is a leading member of Norwich Research Park, one of Europe’s biggest concentrations of researchers in the fields of environment, health and plant science. www.uea.ac.uk

For media enquiries please contact:
Penny Powell, P.Powell@uea.ac.uk: 01603 591238 

Ron Davis talks ME/CFS at Columbia and Princeton

https://www.omf.ngo/2019/11/25/ron-davis-at-columbia-and-princeton/

Written by Janet Dafoe, PhD

Ron Davis spent the last week on the East Coast giving talks and talking individually to scientists and doctors about ME/CFS. First, he spent two days at Princeton University. He talked to individuals, groups of graduate students, and groups at lunches and dinners. He gave a talk in the huge Molecular Biology Department (includes immunology, microbiology, genetics, biochemistry, et al) in a big lecture hall with about 300 scientists. He sensed that they were surprised and shocked by how many people are affected and how severe the disease is. They were impressed by the progress Dr. Davis has made with such minimal NIH funding and relying on donations from patients.

Then Dr. Davis went to the Einstein Medical Center at Columbia University and gave a similar talk to 100 doctors and scientists in person and 184 more who logged in online. Again, they were surprised and shocked by the information he presented. He knew it was being Livestreamed so he didn’t take questions, but talked for 1 1/2 hours and incorporated questions that he is commonly asked. Nobody left. Ron really emphasizes the prevalence and severity of ME/CFS, the need for medical care, the urgent need for research, the growing group of great scientists that are working on it and the fact that none of them have enough funding from NIH.

The week before this, Dr. Davis gave the keynote address at Synchrony 2019, a large Autism conference in Pleasanton, California. Again, he had a large audience of researchers, doctors, and caregivers. They were really impressed by his research and were struck by some of the similarities between Autism and ME/CFS.  OMF Scientific Advisory Board Member Robert Naviaux, MD, talked just before Ron. They are going to collaborate with Ron, sending some patients to his lab so they can investigate similarities and differences. The Autism group will be funded by one of the Autism Foundations since Ron only uses Open Medicine Foundation funds on ME/CFS.


Saturday, 23 November 2019

Low-dose naltrexone in the treatment of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS)

https://www.tandfonline.com/doi/full/10.1080/21641846.2019.1692770

Olli Polo, Pia Pesonen & Essi Tuominen

ABSTRACT

Background: Myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS) is a common medical condition that limits physical and cognitive functions, with no known effective medical treatment.

Methods: We report on the safety and effectiveness data accumulated in clinical practice when treating ME/CFS with low-dose naltrexone (LDN, 3.0 – 4.5 mg/day). The medical records from 218 patients who received ar diagnosis of ME/CFS and LDN treatment during 2010–2014 were retrospectively analyzed.

Results: Outcome data were available in 92.2% of patients with an average follow-up time of 1.7 years. A positive treatment response to LDN was reported by 73.9% of the patients. Most patients experienced improved vigilance/alertness and improved physical and cognitive performance. Some patients reported less pain and fever, while 18.3% of patients did not report any treatment response to LDN. Mild adverse effects (insomnia, nausea) were common at the beginning of the treatment. Neither severe adverse effects nor long-term adverse symptoms were reported.

Conclusions: The high frequency of treatment response and good safety profile observed in this retrospective open label study could prompt prospective controlled studies to confirm the feasibility of LDN in alleviating ME/CFS symptoms.

Monday, 18 November 2019

Tri-Valley Hero: Vidhima Shetty, sharing others' stories


Teen author, journalist from San Ramon receives Rising Star award

by Dolores Fox Ciardelli

Vidhima Shetty, 18, made a name for herself locally with her dogged pursuit to help sufferers of chronic fatigue syndrome.

When she was attending California High School in San Ramon, she became aware of the plight of an afflicted young man in her neighborhood, talked to his family and learned more about the disease. She published an article about it in her school paper, The Californian.

"This disease affects 1.5 million to 2 million people in the United States, but it is not very well-known," Shetty said.

The disease is also known as myalgic encephalomyelitis (ME), which means a neuro inflammation of the brain and the spine.

Shetty said after her story went online, she was surprised by a barrage of emails from people coping with the illness. Compounding the suffering, patients have to deal with people who do not understand it.

"I started getting comments from all over the world, thankful that someone who doesn't have the disease went out of the way to write about it," Shetty said.

In response to the interest, Shetty expanded her research, sought help from medical professionals to review her findings, and last year published a 122-page book, "An Adolescent's Guide to ME/CFS." She donates proceeds to the Open Medicine Foundation, which is doing research to find a cure.

Shetty targeted young people because ME/CFS is the most common reason adolescents are out of school for long periods of time, according to Linda Tannenbaum, CEO of Open Medicine Foundation.

"It's not diagnosed easily so most parents and kids don't know they have it," Tannenbaum told Shetty. "And a lot of people think that the kids are lazy, that they don't want to study, or have a hard time concentrating because they don't try hard enough."

Shetty, the Tri-Valley Hero in the Rising Star category, is now a freshman at Columbia University, which has been a great adventure for her.

"This is my first time ever coming to the East Coast," she said. "I feel like it is definitely a good learning experience."

Many of her new friends hail from other countries so at least she is familiar with life in the United States, she added with a laugh. Shetty said that as she and other new students talk about their interests, she is sure to educate them about CFS.

"It's great to see how they react," she said.

She is majoring in English and economics, suggested by her adviser since Columbia does not have an undergraduate major in journalism. One of the first extracurricular activities Shetty applied for was the school newspaper, the Columbia Spectator, which publishes in print once a week and online daily.

"It's wonderful because it's all student-run and student-led," she said. "You're a trainee for six weeks, then you have to apply to be a staff writer."

Shetty said the atmosphere and rigor of Cal High prepared her for college.

"If anything, I feel like at college the classes aren't so often, so although they are a little bit harder, you have more time to manage your work," she noted.

Despite her whirlwind life in New York, Shetty keeps abreast of research on chronic fatigue syndrome.

"I am still settling in but I know at Columbia there are professors specifically interested in CFS," she said. "I want to reach out to them and get to know, in terms of their research, what they are focusing on."

She plans to update her book as breakthroughs are made.

"I keep in contact with all of the patients I have interviewed," Shetty said. "When you connect with a patient, I don't feel it's something you can ever let go."

Shetty said the Hero award means a lot to her because it helps with her CFS efforts.

"It is a testament to what I want to continue to do," she said. "I hope that through word of mouth people will understand what this disease is, and I hope to raise enough awareness to find a cure and help this community."

"One of the best days of my life will be when we find a cure," she added.

Tuesday, 12 November 2019

Altered cardiac autonomic regulation

http://www.meresearch.org.uk/altered-cardiac-autonomic-regulation/ 

From the ME Research UK website – 

Published in the journal, Medicine, last month was a systematic review looking at “evidence of altered cardiac autonomic regulation in ME/CFS”.

Simply put, “cardiac autonomic regulation” refers to the body’s control system that acts unconsciously to regulate the functions of the heart such as heart rate. This has been a recurring topic in projects funded by ME Research UK, and several of the studies referenced in this new review are from research supported by the charity, including those involving Prof. Julia Newton (Aug 2007, Apr 2009 and Aug 2011) and Prof. Jo Nijs.

The review included 64 publications looking at a number of different measurements in people with ME/CFS and healthy control subjects, including resting heart rate, maximal heart rate during exercise, heart-rate response to head-up tilt testing, and resting heart-rate variability.

A meta-analysis combining the results of multiple studies found that these parameters and more were significantly abnormal in ME/CFS patients compared with controls, indicating that the illness is associated with altered autonomic cardiac function. Although the differences were not sufficiently consistent for any of these parameters to be useful on their own for diagnosis.

These findings are not news if you have been following ME Research UK-funded studies over the last few years, but it is good to see the conclusions confirmed in a meta-analysis that includes results from many other researchers.

Thursday, 7 November 2019

Omnipotent Lord, my Saviour and King

It’s a while since I posted a hymn; I haven’t done this one before. You can listen to it being sung by clicking here

Omnipotent Lord, my Saviour and King,
Thy succour afford, Thy righteousness bring:
Thy promises bind Thee compassion to have;
O, now let me find Thee almighty to save.

Rejoicing in hope, and patient in grief,
To Thee I look up for certain relief;
I shall be supported, no danger I’ll fear,
Nor shrink from the trial, while Thou, Lord, art near.

Yes, God is above men, devils, and sin,
My Saviour’s great love the battle shall win;
So awesome and glorious His coming shall be,
His love all-victorious shall conquer for me.

He all shall break through; His Truth and His grace
Shall bring me into the plentiful place,
Through much tribulation, through water and fire,
Through floods of temptation and flames of desire.

On Jesus, my power, till then I rely,
All evil before His presence shall fly;
When I have my Saviour, my sin shall depart,
And Jesus for ever shall reign in my heart.

Charles Wesley, 1707-88

Saturday, 2 November 2019

WE ME - a Community and ME

http://www.investinme.org/2019booklet.shtml 

A new booklet from Invest in ME Research – 

A condition such as ME presents not only a challenge to the patient who receives the diagnosis, nor only to the family where a child or partner contracts the illness. It tests the values and the fabric of a community. How does the community react?

The reactions and experiences describe how prepared or willing it is to overcome the challenges and support the patient with ME.

A condition such as ME presents not only a challenge to the patient who receives the diagnosis, nor only to the family where a child or partner contracts the illness.

Thanks to funding from an Awards for All grant Invest in ME Research have been able to have printed a small booklet that the team has produced giving an overview of how ME affects a community.

The booklet can be downloaded as a pdf file by clicking here.

From page 3 – 

What is ME?

ME is a multisystem, complex, acquired illness with symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune, endocrine and cardiac systems. ME has been classified as a neurological disorder in the World Health Organisation's International Classification of Diseases since 1969.

The Chief Medical Officer's Report issued in January 2002, recognised that ME "should be classed as a chronic condition with long term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease”. Similarly the Institute of Medicine report of 2015 stated that ME is “a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.”

Wednesday, 23 October 2019

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

https://www.meassociation.org.uk/2019/10/mea-press-release-vital-new-research-could-lay-bare-the-cause-of-one-of-worlds-cruellest-illnesses-23-october-2019/

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

https://www.meassociation.org.uk/2019/10/make-me-visible-campaign-invisible-illness-week-2019-14-october-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

http://bible.christiansunite.com/Morning_and_Evening/chme1011.shtml

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 https://youtu.be/jWlJ0Clv6pw 

02 Linda Tannenbaum and Chris Armstrong – Welcome https://youtu.be/2GSKnDE0biw 

03 Janet Dafoe – Greetings https://youtu.be/mAnCWhEzNGg 

04 Ashley Haugen – Symposium Logistics https://youtu.be/kEnS_d7q0u4 

05 Raeka Aiyar – Revolutionizing Disease Research with Stem Cells https://youtu.be/gilWemHSI1k 

06 Robert Harrington – Video from the Stanford Chair of Medicine https://youtu.be/jMApmri1YDI 

07 Maureen Hanson – Thoughts and Data about ME/CFS https://youtu.be/2BZnL-ZKta4 

08 Alain Moreau – Let’s Talk About You and ME https://youtu.be/AY5yrva1zYY 

09 Oystein Fluge – Lessons from clinical trials in ME/CFS https://youtu.be/fGsqjx-N9yI 

10 Q & A Panel Discussion – Morning Speakers https://youtu.be/T0VhJw2Fh-c 

11 Ron Tompkins – OMF ME/CFS Collaboration at the Harvard Affiliated Hospitals https://youtu.be/hY6rpd4yf2M 

12 Jonas Bergquist – A short video update https://youtu.be/mmIKU1OQH58 

13 Juan Santiago – High-Resolution and High-Throughput Quantification of RBC Deformability https://youtu.be/LnG0TM88tes 

14 Mike Snyder – Big Data, Wearables, and Health https://youtu.be/YoccazReqgU 

15 Robert Phair – Metabolic Traps in ME/CFS https://youtu.be/d9oVHDh8rjk 

16 Ron Davis – What’s Next? https://youtu.be/YdR6ujHxloo 

17 Q & A Panel Discussion – Afternoon Speakers https://youtu.be/j5H8u4FXcHo 

18 Ron Davis – Closing Remarks https://youtu.be/1wvw-idPRSQ 

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 – 



Tuesday, 24 September 2019

Dead But It Won’t Lie Down

Dead but it won’t lie down: The myth that ME (Myalgic Encephalomyelitis) = MUS (Medically Unexplained Symptoms).

http://www.oneagleswings.me.uk/dead-but-it-wont-lie-down/ 

(I did not write this article, but the author (who wishes to remain anonymous) has given me permission to put it on my website.)

How the myth began

Governments in the 1980s, confronted with numbers of people being diagnosed with ME, were concerned about the financial impact of the condition.  The possibility that psychiatrists could offer treatments such as talking therapies, graded exercise or antidepressants, seemed a comparatively inexpensive way out.  The idea of dealing with ME as a psychiatric rather than a physical condition was helped by an article in The Times which used the term “yuppie flu”, a term which somehow impressed itself on many minds. The use of the term “chronic fatigue” has also both trivialised and confused the situation.  After all, chronic fatigue is a symptom of many conditions, and is hardly a description of the many serious symptoms of ME.

How the myth has been perpetuated

The very broad criteria used by some in diagnosing ME resulted in a mixed bag of conditions being lumped together: some physical, some mental, some serious, some less so.  With such an assortment of patients to treat, a reasonable number could be relied on to improve with the “treatments” on offer.  The fact that these recovered patients never had the actual illness known as ME in the first place was disregarded or not understood.

Why the myth should now be buried

Over the years there have been those who have dedicated their time and their medical knowledge to understanding this illness.  Able by their medical experience to recognise a serious physical condition, they have also been able to understand some of the physical causes which must lie behind the many symptoms.  Their belief in what patients were telling them and their persistence in seeking answers has been the one ray of light in a very dark tunnel for those who have been ill for years or decades, without help and support.  The good news is that science is now filling in the gaps in knowledge.  Excellent research at Stanford University has shown the failure of the body’s energy production system, making exercise therapy both useless and dangerous.  This is very much a work in progress, but there is more than sufficient evidence already of a very serious physical disease for the MUS myth, as far as ME is concerned, to be buried as deep as possible.

© 2019.