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.

Monday, 16 September 2019

Ron Davis discusses his research at Stanford and An Exciting Week for Advancing ME/CFS Research



Ronald W. Davis is a Professor of Biochemistry and Genetics at Stanford University and Director of the Stanford Genome Technology Center. He also has a personal connection to ME/CFS -- his son was diagnosed almost 10 years ago.

In this interview with Llewellyn King, Ron discusses his research at Stanford.

The interview was posted on YouTube on September 13th 2019.

------------------------------------------------------------------------

An Exciting Week for Advancing ME/CFS Research 

https://www.omf.ngo/2019/09/16/an-exciting-week-for-advancing-me-cfs-research/

Linda Tannenbaum 

I’m pleased to share with the OMF community that the OMF sponsored Stanford ME/CFS Working Group and Third Annual Community Symposium on the Molecular Basis of ME/CFS once again is helping to advance urgently needed research on this disease.

During the three days prior to the Community Symposium, 60 scientists from all over the world, including OMF Scientific Advisory Board members, actively participated in the Working Group. They gathered behind closed doors to brainstorm and openly discuss new ideas to move this field forward.

It was wonderful to see that this year there were new faces and early-career participants, including talented engineers, contributing to the discussions. From my conversations during the meetings, it struck me again how much kindness, passion and collaborative spirit all the participating scientists have.

At the lovely pre-symposium dinner on Friday evening at Dr. Ron Davis’s home, I had the pleasure to thank Dr. Davis as well as Dr. Ron Tompkins, Dr. Wenzhong Xiao, and Dr. Jonas Bergquist for the initiative they’ve taken in leading the OMF-funded Collaborative Research Centers, as well as the many scientists, donors, leaders and OMF staff for all their hard work.

On Saturday, the Community Symposium provided our outstanding panel of speakers an opportunity to share updates with the international ME/CFS community as well as those attending in person. Nearly 300 people were present, mostly from the U.S. but also from Sweden, Norway, Canada, Korea, Japan and Italy, and the Livestream broadcast and Facebook Live reached thousands more around the world.

In between presentations, patients, scientists and clinicians exchanged insights and ideas. It’s always inspiring to see how the scientists and clinicians in this field are personally invested in finding answers for patients fast, and how much they’re interested in learning from patients and using these events to interact with the community as much as possible.

Paolo Maccallini, a patient-expert who traveled from Italy to attend, described the experience perfectly: “Meeting all these top-notch scientists, gathered to share their perspectives on the latest advancements in the knowledge of ME/CFS, was thrilling. You deeply perceived the collaborative spirit and the professional trust they have for each other. This, along with the information they shared, made me confident for a hopeful future for patients.”

The Symposium ended on a very encouraging note, when all six speakers who were on stage for the closing panel discussion agreed, “We are very hopeful for the near future!”

In the years I’ve been working to end ME/CFS, I’ve never felt more hopeful and inspired. Our talented research collaborators have the expertise to figure this out, and the generous support of the community continues to grow so we can accelerate the pace of discovery.

With that in mind I want to emphasize to patients, keep hope alive; there’s light at the end of the tunnel, now more than ever!

Thank you all for being a part of this unique community effort, and I look forward to keeping you updated on the exciting ME/CFS research that you help make possible. We will share an overview of the Symposium from Dr. Chris Armstrong soon.

With hope for all,

Linda Tannenbaum

Founder & CEO/President

Monday, 9 September 2019

Tribute paid to Professor Peter Behan – M.E. expert and ME Association patron


On the ME Association website – 

Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

I knew Peter Behan as a friend and colleague for almost 40 years.

I first met him when the late Dr Melvin Ramsay, who originally diagnosed my own M.E. following an episode of chickenpox encephalitis, suggested that I should go and see Peter at the Institute of Neurological Sciences at the University of Glasgow to help with the research that he was doing into the condition. 

It was immediately obvious that Peter was a very kind and caring physician who knew all about ME.  

Peter was also an outstanding neurologist who, along with his wife Professor Mina Behan and virologist Professor John Gow, was carrying out important research into brain, muscle and immune system function, along with the role of infection, in people with M.E.

Unlike most of his neurology colleagues he had no doubt that M.E. was a serious neurological illness and that the patients were being badly let down by both clinicians and the research community.  

The papers that were published from his research group at the time played a significant role in helping to change medical opinion about M.E. and the whole situation regarding research. 

The fact that M.E. was firmly on the medical curriculum at the Southern General Hospital also meant that a succession of neurologists working in Peter’s team gained a solid knowledge of the condition – Dr Abhijit Chaudhuri in particular, who now advises the ME Association on neurology.

Peter continued with his research interest well into retirement and helped to develop the research strategy for the MEA Ramsay Research Fund and made personal donations to the fund.

In recognition of his contribution to both clinical and research work he was invited to become a Patron of the ME Association – a position he held until his death at the end of August.

Peter was excellent and amusing company – either in Glasgow, or up in Denkeld where he was an accomplished fisherman with an encyclopaedic knowledge of salmon fishing. Each year at Christmas we would receive one of Peter’s whole smoked salmon from the Tay!

I kept in touch with Peter following his move to Edinburgh where, despite failing health in the past few years, he was always keen to know what was happening to research into M.E.

We all owe an enormous debt of gratitude to Peter. He will be sadly missed and I will be attending his funeral on Friday 13th September in Edinburgh on behalf of the ME Association.

Obituary

BEHAN Professor Peter Oliver Professor Emeritus of Neurology, MD DSc FACP FRCP FLS, University of Glasgow Died peacefully at home, in Edinburgh on 31st August 2019, aged 84. Husband of the late Professor Wilhelmina Behan. Loving father to Charlotte, Miles and Edmund and devoted grandfather. Very dear friend to Dr Valerie Cairns. A service will be held at Warriston Crematorium, Lorimer Chapel, Edinburgh on Friday, 13th September at 1pm, to which all are welcome. Family flowers only. The Herald

Thursday, 5 September 2019

The Lord will be with you

http://bible.christiansunite.com/Faiths_Checkbook/faith0905.shtml

C H Spurgeon's Cheque Book Of The Bank Of Faith Daily Devotional for 5th September

“The Lord will be with you.”

2 Chronicles 20:17

This was a great mercy for Jehoshaphat, for a great multitude had come out against him; and it will be a great mercy for me, for I have great need, and I have no might or wisdom. If the Lord be with me, it matters little who may desert me. If the Lord be with me, I shall conquer in the battle of life, and the greater my trials the more glorious will be my victory. How can I be sure that the Lord is with me?

For certain He is with me if I am with Him. If I trust in His faithfulness, believe His words, and obey His commands, He is assuredly with me. If I am on Satan's side, God is against me and cannot be otherwise; but if I live to honor God, I may be sure that He will honor me.

I am quite sure that God is with me if Jesus is my sole and only Savior. If I have placed my soul in the hands of God's only-begotten Son, then I may be sure that the Father will put forth all His power to preserve me, that His Son may not be dishonored.

Oh, for faith to take hold upon the short but sweet text for today! O Lord, fulfill this word to Thy servant! Be with me in the house, in the street, in the field, in the shop, in company, and alone. Be Thou also with all Thy people.

Monday, 2 September 2019

Investigating sensory processing and cognitive function in people with ME: a pilot study

http://www.meresearch.org.uk/our-research/sensory-processing/

From the ME Research UK website –

Investigators
Dr Sanjay Kumar and Dr Farzaneh Yazdani

Institution
Oxford Brookes University, Oxford, UK

Start date
September 2019

Background and aim

Our senses are constantly being bombarded with information from our surroundings – the sights, sounds, sensations and smells around us, as well as the tastes in our mouths.

The brain has to work hard to process all this information simultaneously, and filter out what’s irrelevant so we can concentrate on what’s important at any given moment. But this ability can be impaired in people with certain clinical conditions, leading to a disabling hypersensitivity to the stimuli around them.

The resulting physical and mental overload can lead to poor coordination, dizziness, clumsiness, numbness, tingling and nausea, and may affect individuals’ ability to take in information and make decisions.

Dr Sanjay Kumar, Dr Farzaneh Yazdani and colleagues at Oxford Brookes University have previously looked at this phenomenon in people with post-concussion syndrome following head injury. And we recently awarded funding to the team to investigate the problem in ME/CFS.

Although hypersensitivity is not considered a primary factor in the diagnosis of ME/CFS, it is a common finding in people with the condition. This was borne out when the team met with people from a local ME support group, many of whom identified with the issue and said that it interfered with their daily life.

This prompted a series of investigations to understand the nature and impact of the sensory problems experienced by people with ME/CFS, and to determine whether they are associated with any functional or electrical changes in the brain.

The team aims to recruit 40 patients with ME/CFS and 40 healthy control subjects, and will begin their investigations by using a self-report questionnaire to assess patterns of sensory processing and how they affect functional performance.

The participants will then complete a series of neuropsychological tests (see below) to investigate a range of cognitive processes, followed by some simple computer-based tasks, while the electrical activity of the brain is measured non-invasively using electroencephalography.

The investigators’ hope is that the results of this preliminary work will help in our understanding of the brain mechanisms that underlie the abnormal sensory experiences of people with ME/CFS, and also lead to the development of interventions to help manage these problems.

Neuropsychological tests

Motor Screening Task – Participants are introduced to the format of the tests and responding via a touchscreen, and are asked to select on-screen crosses as they appear. Measures speed of response and accuracy, and tests for sensorimotor deficits or lack of comprehension.

Rapid Visual Information Processing – Assesses how well someone can keep attention on a task, in this case pressing an on-screen button when they see a predefined sequence of numbers (e.g. 2-4-6) within a random stream of numbers. Measures speed of responses and number of false alarms.

Delayed  Matching  to Sample – Assesses visual recognition and short-term visual memory by asking participants to match a pattern to one of four options shown below it. Measures speed of responses and number of correct patterns selected.

Stop Signal Task – Assesses how well someone can control their impulses. Participants are presented with an arrow and asked to press an on-screen button corresponding to whether it points left or right, but they must not respond if they also hear a beep. Measures reaction time and number of errors.

Thursday, 22 August 2019

Relationship between physiotherapists and people with M.E. is poor but there is potential to improve

https://www.meassociation.org.uk/2019/08/relationship-between-physiotherapists-and-people-with-m-e-is-poor-but-there-is-potential-to-improve-22-august-2019/

From the ME Association website –

Relationship between physiotherapists and people with M.E. is poor but there is potential to improve

By Karen Leslie, Natalie Hilliard, Michelle Bull, and Nicola Clague-Baker.

We are a group of physiotherapists from across the UK with a special interest in M.E.

In July we set a poll on the MEAssociation website asking about your experiences with physiotherapy.

We wanted to understand the perception of our profession and examine the effectiveness of treatment for people with M.E.

Thank you to everyone who completed the survey and to those who took the time to contact us directly with your stories.

Experience of physiotherapy

A total of 441 people answered the poll, and of those 232 (53%) had experienced physiotherapy.

Of those who had physiotherapy, 36% found it to be a positive experience, but over half (54%) had a negative experience.

The positive stories described physiotherapists who would work in partnership with their patients, open to learning about the disease and taking the time to listen and adapt treatment depending on how the symptoms were responding.

The negative stories highlighted a lack of professionalism that was really shocking and disappointing to read.

Effectiveness of physiotherapy treatment

In terms of the effectiveness of physiotherapy, only 11% of respondents reported that their symptoms improved, whereas a worrying 53% reported that physiotherapy made their M.E. symptoms worse.

Even within those who reported a positive experience of physiotherapy, 70% said it still didn’t make their M.E. better.

From the personal stories we received via email, Twitter and Facebook, we were able to build a sense of the kinds of treatment people with M.E. were receiving.

Various forms of exercise were described, as well as manual treatments like joint mobilisations and massage.

Some people received physiotherapy as a direct intervention to their M.E. symptoms, whereas others encountered physiotherapists for secondary problems such as joint pain.

What struck us most was there was no single treatment highlighted as either detrimental or effective. For example, some people responded very well to massage and found it gave them pain relief, but others reacted poorly and experienced more pain.

While any mention of graded exercise was included in a negative account, some people reported benefits from various low-level activities like core stability work.

This really showed how every person with M.E. is unique and that any treatment plan must be specific to the individual, not a standardised approach.

One of our favourite anecdotes was someone whose entire encounter with a physiotherapist involved them changing the configuration of their pillows. Although fleeting, this one act allowed the person to sleep more comfortably, which had a really positive impact on their quality of life.

It is these small but effective management strategies that we feel physiotherapists can excel at, and we should be exploring more for this patient group.

Overall the results suggest the general relationship between physiotherapists and people with M.E. is poor but indicates there is potential to improve.

Physiotherapy may not be a “treatment” for this disease, but therapists could use their skills to provide management solutions that can have a benefit to quality of life.

Next Steps

This data will help to provide background to our group’s work as we start the task of engaging with physiotherapists with the aim to raise awareness of the issues around physiotherapy treatment for people with M.E.

We have really appreciated the input from the M.E. community so far and the warm welcome we have received. You have even helped us to choose and design our logo through Twitter and Facebook polls!

We cannot provide medical advice as we are a virtual group, but we can signpost to useful resources for you or your therapist. Or you are welcome to share your experiences of physiotherapy for ME.

Please feel free to contact us at: physiotherapyforme@gmail.com

Thank you.

Monday, 19 August 2019

Very Severe ME: It’s Time for Something New!

https://www.meassociation.org.uk/2019/08/very-severe-me-its-time-for-something-new-by-greg-crowhurst-16-august-2019/ 

Guest blog by Greg Crowhurst – on  the ME Association website

This is the first of a series of blogs looking at pertinent issues regarding Very Severe ME and builds on Greg’s own experiences caring for his wife, Linda. It follows his recent contribution to Severe ME week.

I have cared day and night for my wife who has lain in unspeakable torment, torture and agony, for twenty-six years. The personal cost to us both because of M.E. has been enormous.

Communication is broken on every level. As soon as she has spoken, she forgets what she has said.

If I speak or ask a question it can cause unimaginable confusion and head-pain, shaking spasms, and deterioration.

Thoughts and memories are mostly beyond access. I must represent her and speak for her whenever the need arises.

Literally everything hurts her and risks deterioration to partial or total paralysis. One wrong movement or noise and the whole day is ruined before it has begun. People simply do not understand.

Who can possibly imagine living in such an assaulting and broken world for decades, without adequate investigation, care or support?

* We receive no support from the Church or local community
* We have had been forced to live below the poverty line
* Society has lost out on our professional skills (I am an award-winning Nurse, my wife is a qualified Social Worker, Counsellor and Teacher)
* We live in almost complete isolation, as my wife’s agony and hypersensitivities are so intense, that she cannot bear contact or interaction
* We have not been able to have children of our own
* I was in my 30’s when my wife became ill, shortly after we got married, I am now in my 60’s
* We were both highly respected professionals, but I have openly been called a “waste of space” as a carer
* My wife’s profound suffering goes unrecognised and ignored as if she does not exist
* Nieces and nephews have grown into adulthood, married, had children who we do not know and who do not know us
* Parents have got old and people have gotten sick without being able to visit them even when dying or to attend their funerals

We live in a hamlet, four miles from what is regularly voted the best beach in England. My wife has never even seen it, let alone put her feet in the endless sand, felt the sea splash over her toes, heard the pines whisper above the dunes.

Every aspect of care, including how and when I move, how and when I act, how and when I speak, not just in the room – for it still has impact in any part of the house – needs to be carefully thought through and brought into my awareness.

We can never do the things other people take for granted, like:

* go on holiday
* out for a meal
* a coffee at a cafe
* a show
* a concert
* a film
* to see a band
* for a walk together with the dog
* cycle
* shop
* sail
* swim
* play games, like badminton, tennis, or volleyball
* walk hand in hand
* entertain friends
* have dinner parties
* go to church, although our faith is immensely important to us

I have had to learn to take a Moment by Moment approach, to ensure the need is met in the right moment in the right way.

This is much harder than it sounds and needs the right attitude, a person-centred, partnership approach, understanding and focus.

My wife cannot:

* read a book, play guitar, study or, learn
* listen to the radio
* follow conversation or engage in normal two-way conversation
* have anyone in the house due to perfume, noise and movement sensitivity
* tolerate virtually any contact at all
* have anyone making noise in the room with her
* bear even the simplest thing like having a cuddle or holding hands
* find rest ever, for rest increases her physical suffering

Our days are spent, without exception, struggling to cope from moment to moment in the most awful suffering anyone could imagine; except you couldn’t possibly imagine just how bad it is.

People I have known, dying of cancer, have still enjoyed a better quality of life than my wife. I simply cannot bear the thought of anyone else with M.E.:

* having to endure the agony, the mistreatment, the abuse of power, the misrepresentation, the incompetence, the ignorance, the denial, the lack of accountability, the not being able to access safe, aware, medical advice or tests that would help show up the physiological dysfunction, the physical harm, the ongoing suffering that has no end in sight, down all these many years.
*having to cope, as we have, somehow, from the devastating consequences of wrong treatment that caused an irreversible deterioration.
* having to fight, as we have, every step of the way against the Establishment’s entrenched psychosocial mind set.

It is surely time for a quantum-leap change in attitude towards identifying, investigating, testing, diagnosing and supporting people with M.E.

It is surely time to stop using the label M.E. to mean anything other than the specific disease Myalgic Encephalomyelitis, classified by the WHO as a neurological disease and with multi-system dysfunction.

It is time to stop the misuse of the name Myalgic Encephalomyelitis to mean an umbrella term, incorporating a wide range of unidentified conditions and illnesses including mental health conditions and/or those either referred to as idiopathic chronic fatigue or medically unexplained symptoms (MUS).

It is vital that those who are most ill – especially the estimated 2% of M.E. patients diagnosed with Very Severe M.E. – are recognised, kept safe from wrong treatment and misinterpretation, protected from further deterioration or needless suffering, and cared for in the most appropriate way.

It is surely time for the creation of an appropriate medical pathway that honours the person and their disease. We need something new!

Saturday, 17 August 2019

This Sickness Is Not Unto Death

http://bible.christiansunite.com/Morning_and_Evening/chme0817.shtml

C H Spurgeon's Evening Devotional for 17th August

“This sickness is not unto death.”

John 11:4

From our Lord's words we learn that there is a limit to sickness. Here is an "unto" within which its ultimate end is restrained, and beyond which it cannot go. Lazarus might pass through death, but death was not to be the ultimatum of his sickness. In all sickness, the Lord saith to the waves of pain, "Hitherto shall ye go, but no further." His fixed purpose is not the destruction, but the instruction of His people. Wisdom hangs up the thermometer at the furnace mouth, and regulates the heat.

1. The limit is encouragingly comprehensive. The God of providence has limited the time, manner, intensity, repetition, and effects of all our sicknesses; each throb is decreed, each sleepless hour predestinated, each relapse ordained, each depression of spirit foreknown, and each sanctifying result eternally purposed. Nothing great or small escapes the ordaining hand of Him who numbers the hairs of our head.

2. This limit is wisely adjusted to our strength, to the end designed, and to the grace apportioned. Affliction comes not at haphazard-the weight of every stroke of the rod is accurately measured. He who made no mistakes in balancing the clouds and meting out the heavens, commits no errors in measuring out the ingredients which compose the medicine of souls. We cannot suffer too much nor be relieved too late.

3. The limit is tenderly appointed. The knife of the heavenly Surgeon never cuts deeper than is absolutely necessary. "He doth not afflict willingly, nor grieve the children of men." A mother's heart cries, "Spare my child"; but no mother is more compassionate than our gracious God. When we consider how hard-mouthed we are, it is a wonder that we are not driven with a sharper bit. The thought is full of consolation, that He who has fixed the bounds of our habitation, has also fixed the bounds of our tribulation.

Tuesday, 6 August 2019

Two new videos about the PACE Trial

The PACE trial - Part 1: Moving the goalposts


The PACE trial - Part 2: Harm



Apparently there are more videos in the pipeline – you can look out 
for them on the YouTube playlist by clicking here.

Thursday, 1 August 2019

The IDO Metabolic Trap

https://www.omf.ngo/2019/07/26/the-ido-metabolic-trap/

From the Open Medicine Foundation website – 

By Christopher Armstrong, PhD

Dr. Robert Phair has recently published a paper detailing his “metabolic trap” hypothesis underlying ME/CFS, a theory that combines engineering and physiology put together by a man adept in both fields. Dr. Phair is co-founder and Chief Science Officer of Integrative Bioinformatics, Inc, a small company built around a unique software capable of modeling human biochemistry and theories of disease. Development of this theory was funded by Open Medicine Foundation (OMF). The paper, published in the open access journal, Diagnostics, is co-authored by Alex Kashi and Dr. Ron Davis, OMF Scientific Advisory Board Director and Director of the Stanford Genome Technology Center (SGTC).

Interestingly, understanding the theory of the “metabolic trap” opens the eyes to some unique elements of ME/CFS.

Like most chronic diseases, ME/CFS can be triggered by various factors and can run in families indicating a genetic element. Unlike other chronic diseases, ME/CFS can occur in outbreaks or epidemics. For outbreaks to exist, the genetic element of ME/CFS must be common enough for a large proportion of exposed people to get the disease. This thought process led Dr. Phair to look for damaging genetic mutations that were common in the broader population but present in 100% of ME/CFS patients. A search of public genome databases including the OMF-funded ME/CFS Severely ill Big Data Study led to IDO2. The IDO2 gene stood out because it has four common damaging mutations, and every ME/CFS patient in the Severely ill Big Data Study has at least one of them.

This story isn’t solely about IDO2 though, it’s also about its brother, IDO1. The IDO1 and IDO2 genes are named so similarly because they each encode for enzymes that transform an essential amino acid (tryptophan) into an important regulator of the immune system (kynurenine). The main difference is that when tryptophan is at high levels in a cell, the IDO2 enzyme increases its production of kynurenine while, surprisingly, the IDO1 enzyme decreases its production of kynurenine. If you have a problem with IDO2 (mutations in the gene) then you must rely solely on IDO1 to produce kynurenine from tryptophan. If for any reason the tryptophan levels in a cell rise too high, then IDO1 will stop making kynurenine and tryptophan levels will remain high. This is the IDO metabolic trap.

When we think of ME/CFS we often break the disease down into predisposing, triggering and maintaining factors. In this case, the predisposing factors are the damaging mutations in IDO2, the triggering factor is an elevation in tryptophan and the maintaining mechanism is that the IDO1 enzyme can’t convert tryptophan to kynurenine when tryptophan is high, therefore maintaining a high level of tryptophan and the low level of kynurenine in the cell.  Mutations in IDO2 are common in the human population but it is unlikely that many would get ME/CFS. This is because the triggering is unlikely. Apparently, it is difficult to increase tryptophan enough to trigger the trap. That trigger likely requires an overlay of many factors, including pathogens, stressors and the environment.

This paper is avowedly theoretical; it elucidates the biochemical and mathematical foundations of the “IDO metabolic trap” as well as the experimental tests required to test the theory. Currently, these experimental tests are funded by OMF and ongoing at Stanford University in collaboration with Dr. Davis and his colleagues at the SGTC.

Read the full paper The IDO Metabolic Trap Hypothesis for the Etiology of ME/CFS.

Wednesday, 24 July 2019

14th IiME Conference Presentations Now Online

http://www.investinme.org/IIMEC14.shtml

The 14th Invest in ME Research International ME Conference 2019 - IIMEC14 - took place on 31st May 2019 in London and attracted delegates from twenty different countries - from Europe, North America and Australasia.

The conference day was preceded by the 9th Invest in ME Research International Biomedical Research into ME Colloquium - a two day closed researchers' meeting with almost 100 eminent researchers invited to attend from fourteen countries - and the full day Thinking the Future - Young/ECR Conference for young and early career investigators.

All the talks from the conference are now available to watch on the IiME Research website by clicking here or on their YouTube channel here.

14th IiME Conference Report from Dr Rosamund Vallings (Auckland, New Zealand) can be found by clicking here.

Saturday, 20 July 2019

The earnest of our inheritance


C H Spurgeon's Morning Devotional for 20th July

"The earnest of our inheritance."

Ephesians 1:14

Oh! what enlightenment, what joys, what consolation, what delight of heart is experienced by that man who has learned to feed on Jesus, and on Jesus alone. Yet the realization which we have of Christ's preciousness is, in this life, imperfect at the best. As an old writer says, "'Tis but a taste!" We have tasted "that the Lord is gracious," but we do not yet know how good and gracious He is, although what we know of His sweetness makes us long for more. We have enjoyed the firstfruits of the Spirit, and they have set us hungering and thirsting for the fulness of the heavenly vintage. We groan within ourselves, waiting for the adoption. Here we are like Israel in the wilderness, who had but one cluster from Eshcol, there we shall be in the vineyard. Here we see the manna falling small, like coriander seed, but there shall we eat the bread of heaven and the old corn of the kingdom. We are but beginners now in spiritual education; for although we have learned the first letters of the alphabet, we cannot read words yet, much less can we put sentences together; but as one says, "He that has been in heaven but five minutes, knows more than the general assembly of divines on earth." We have many ungratified desires at present, but soon every wish shall be satisfied; and all our powers shall find the sweetest employment in that eternal world of joy. O Christian, antedate heaven for a few years. Within a very little time thou shalt be rid of all thy trials and thy troubles. Thine eyes now suffused with tears shall weep no longer. Thou shalt gaze in ineffable rapture upon the splendour of Him who sits upon the throne. Nay, more, upon His throne shalt thou sit. The triumph of His glory shall be shared by thee; His crown, His joy, His paradise, these shall be thine, and thou shalt be co-heir with Him who is the heir of all things.

Saturday, 13 July 2019

How Can I Help Someone With Severe M.E.?

https://25megroup.org/wp-content/uploads/2019/05/How-to-Help-Someone-with-Severe-Myalgic-Encephalomyelitis-3.doc

From The 25% M.E. Group

• Most importantly, people with M.E. need to be believed and respected. Simple as that! If you have read our leaflet “8th August Severe Myalgic Encephalomyelitis Understanding and Remembrance Day” you know how serious M.E. can be. It is an awful illness – show your friend/relative that you know that.

• Even severe illness may not be instantly apparent – for example your friend/relative may be able to walk to the toilet, yet be too ill to go out in a wheelchair, watch TV or even sit up in bed for more than a few minutes. They may spend most of their energy on something as basic as eating. They may look remarkably well for half an hour or an hour, but then spend the rest of the day in pain in a darkened room.

• Flare up of symptoms after activity or stimuli is a key feature of the illness. The activity may be tiny by healthy standards and stimuli things you probably don't even notice (such as light, movement, or background noise). Here are a few ways to help: shut doors (to reduce noise), use headphones if watching TV nearby, be aware that talking uses energy – ask your friend/relative how long the conversation needs to be and try to stick to that. If they seem particularly energetic, ironically this may be a sign that they are doing too much (and running on adrenaline!) - ask if they need a rest.

• Severe Myalgic Encephalomyelitis is very isolating. People with this illness are too ill to work or go to school, and most miss out on all social events and family gatherings. They may be too ill to communicate with friends and family, or to see their doctor (even at home), and they may feel very misunderstood. You can help ease the isolation by including your friend/relative as far as their illness will allow. For example you could take a few pictures of changes in the neighbourhood, video a special event (if they are well enough for TV), send a card, or ask if they want anything when you go to the shop.

• Your friend/relative may be too ill to use the phone, or to receive visits. This doesn't mean they don't want contact. You can still send postcards, or where suitable keep in touch with a carer. Many people with M.E. can manage texts more easily than conversations, so this may be a possibility.

• Watch the excellent film Voices from the Shadows. Some scenes may be distressing, so watch with care, especially if you have M.E. yourself.  
http://voicesfromtheshadowsfilm.co.uk/

• The 25% group can arrange for information to be sent to any health care or social services professional either directly or through the enquirer – please ask if this might be helpful. We also have an advocacy service for anyone who is struggling with the benefits system.

• Research demonstrates an abnormal response to exercise in Myalgic Encephalomyelitis, and the illness can become more severe through attempting to 'push through' the symptoms. Patients need to pace small activities (whether physical or mental) with regular rests. This is extremely challenging, and takes a lot of self-control, as patients want to be getting on with their lives. You can help by being aware of the temptation to do too much, by asking your friend/relative whether they need a rest.

8th August is a day to remember those who have lost their lives to this illness, and those living with it. Please talk to your friends about Myalgic Encephalomyelitis to help spread awareness, post something on Facebook, and maybe share a link to www.25megroup.org  Spend some time reading our website, to inform yourself about the illness.

Donate! The 25% ME Group represents those who are severely affected by this illness, and we will make good use of any donations. You can send a cheque to the address below, or donate online via the donate button on the website.

Thank you for reading this leaflet and for caring about your friend/relative. If you have any more questions or concerns, please do contact us by email at: 
enquiry@25megroup.org

SEVERE MYALGIC ENCEPHALOMYELITIS
UNDERSTANDING & REMEMBRANCE DAY
8th August

25% M.E. Group
21 Church Street,
TROON,  Ayrshire   KA10 6HT
Tel:  01292 318611
Advocacy Helpline:  0141 570 2938

See our WebPages on:  www.25megroup.org

Charity No: SC034265

PATRON: Dr Byron M Hyde MD
MEDICAL ADVISOR: Dr N Speight MA, MB, B Chir, FRCP, FRCPCH, DCH
SCIENTIFIC ADVISORS: Dr Vance Spence PhD
Prof M Hooper PhD. B.Pharm. C.Chem. MRIC