Monday, 19 August 2019

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

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

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

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

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.?

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.

• 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  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:

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:

Charity No: SC034265

PATRON: Dr Byron M Hyde MD
Prof M Hooper PhD. B.Pharm. C.Chem. MRIC