Saturday, 18 July 2015

The European ME Research Group

A Future for European Research into Myalgic Encephalomyelitis

For a long time it has been the objective of Invest in ME to forge international collaborations between researchers.

IiME is a member of the European ME Alliance (EMEA) and recently EMEA has joined the European Federation of Neurological Associations in order to promote ME in Europe [1].

With our EMEA colleagues we have also had discussions on forming a European Advisory Board which would allow EMEA to discuss, initiate and fund biomedical research into ME.

This has led to further development of the idea.

During the recent Invest in ME BRMEC5 meeting in May this year [2] discussions with European researchers were conducted about the future of ME research and how better to coordinate and link together research activity in several European countries.

Based upon these conversations there appears to be overwhelming support and enthusiasm from the group of researchers whom IiME/EMEA have brought together to work cooperatively and more effectively.

Forming a group or consortium of European researchers represents a very progressive step in not only helping to establish new collaborations and cement on-going ones but also in developing new research ideas and priorities and bidding for funds that would allow us to work together on joint projects.

This is the genesis of EMERG! The European ME Research Group

The charity and EMEA colleagues are arranging the inaugural meeting in London this autumn - a new and exciting venture for ME research.

Facilitated also by our supportive MPs we will convene the first meeting to bring this together in the hope that rapid and lasting progress can be made in the research, treatment and cure for myalgic encephalomyelitis.

More information will be provided later.

In the meantime EMEA will be setting up a competition to devise a logo for EMERG – The European ME Research Group.

A European logo design competition will help inform patients/members about this development and keep all involved in its progress.

Details of the competition will be available soon on EMEA’s website – but we invite all European patients to begin thinking of designs to support this bold, new venture.


2              BiomedicalResearch into ME Colloquium 5

Monday, 6 July 2015

Chronic fatigue breakthrough offers hope for millions

(This article unfortunately refers to "chronic fatigue syndrome" – but I imagine it will be relevant to at least some with ME.)

Misunderstood and neglected for more than 25 years, there is suddenly new hope for people diagnosed with what was once cruelly called "yuppy flu"

HAVING a condition that no one understands is bad enough. Having one that many also doubt the existence of is worse. Yet that has been the unenviable fate of millions of people diagnosed with chronic fatigue syndrome.

CFS first entered the medical lexicon in 1988 to describe a cluster of symptoms without an obvious cause that doctors were seeing in the Lake Tahoe area of Nevada. The principal symptom was debilitating tiredness, but people also complained of sore throats, headaches, muscle pain and various other manifestations of general malaise.

The lack of a clear biological cause, the fuzziness of the symptoms and the fact that many of the people diagnosed were young professionals opened the door to a smear campaign. The media were quick to dub CFS "yuppie flu".

Although it has shaken off some of its more pejorative nicknames in recent years, CFS has struggled to lose the stigma. People with the syndrome still say they are not taken seriously, blamed for their illness, or accused of malingering. Treatments are often psychiatric, which are a great help to many but unintentionally add weight to the idea that CFS has no physical cause.

Over the years, medical groups have launched campaigns to have CFS taken more seriously. The latest was in February, when the US Institute of Medicine proposed making a clean break with the past by renaming it systemic exertion intolerance disease. This has not caught on as yet.

The unsatisfactory state of affairs is largely a reflection of the fact that we do not have a good biological explanation for CFS. That has not been for lack of trying, but even here the disease seems to be a magnet for controversy. A paper published in 2009 in Science claimed to have found an association between CFS and a mouse virus. The paper was later retracted after other teams failed to replicate the result.

Now there is hope of a breakthrough. Researchers in Norway have been trialling a drug normally used to knock out white blood cells in people with lymphoma and rheumatoid arthritis. Two thirds of the people who took it experienced major remission of CFS symptoms, essentially returning to normal life, with bursts of vitality unthinkable while they were ill (see "Antibody wipeout relieves symptoms of chronic fatigue syndrome").

The discovery – which sprang from a serendipitous observation – offers more than just the promise of a much-needed treatment. It also suggests that the symptoms are somehow caused by antibodies originally produced to fight off an infection. The researchers speculate that they might disrupt blood flow, leaving muscles drained of energy.

If correct, this brings the scientific story full circle. CFS was initially suspected to be a "post-viral" syndrome – the lingering after-effects of an infection with Epstein-Barr. More importantly, it could offer people diagnosed with CFS both physical relief and psychological closure.

There are wider implications too. Pain and fatigue without an obvious cause account for a large percentage of visits to the doctor, and usually have an unsatisfactory outcome. On top of that, there are many other conditions – Morgellons, for example – that struggle for credibility. If the CFS mystery is finally solved, that offers hope to countless others struggling with unexplained symptoms. It may take another serendipitous discovery, but science is good at those.

This article appeared in print under the headline "Revitalised"

Thursday, 2 July 2015

What Various Hindrances We Meet

(Although written for 2013, this article undoubtedly applies to any time.)

A word for 2013

“But Moses’ hands were heavy; and they took a stone, and put it under him, and he sat thereon; and Aaron and Hur stayed up his hands, the one on the one side, and the other on the other side; and his hands were steady until the going down of the sun” Exodus 17:12

This chapter of Exodus finds God’s people continuing their journey to Canaan, the Promised Land. The next stop on route is a place called Rephidim (verse 1), which means “rest.” The weary travellers hoped for that, and for water. However, “there was no water for the people to drink” (verse 1b). The streams had dried up, thirst could not be quenched, and they faced a crisis.


The Lord promised to bring His people to Canaan (Exodus 3:8), but He had not promised a journey there free of difficulties. However, within that promise lay the certainty of His presence and provision. And it is so for Christians – we are not promised an easy path to heaven, but since we are promised heaven, it includes everything necessary on the way. As Dr. Ryland put it, He that hath made my heaven secure Will here all good provide.

Therefore, every such need tests our faith in God. The Lord reminded the Israelites of this years afterwards,

And thou shalt remember all the way which the LORD thy God led thee these forty years in the wilderness, to humble thee, and to prove thee, to know what was in thine heart, whether thou wouldest keep his commandments, or no. (Deuteronomy 8:2).


Here, it proved revealing, with another bout of complaining: “And the people thirsted there for water; and the people murmured…” (Exodus 17:3). Instead of looking to the Lord in this new emergency, they found fault with His dealings. We never know ourselves until the Lord shows us what is in our hearts. Then we know where we need more grace.

However, as always, the Lord already had the solution, Behold, I will stand before thee there upon the rock in Horeb; and thou shalt smite the rock, and there shall come water out of it, that the people may drink. And Moses did so in the sight of the elders of Israel (Exodus 17:6).

It was a miracle. Water came from the most unlikely of places: the dry, flinty rock. The greater the need, the greater the glory to God when He meets that need.

However, no sooner is this emergency met than another comes: an attack from the Amalekites, “Then came Amalek and fought with Israel in Rephidim” (verse 8). It is often like this: not one trial but often two, sometimes even three at a time. How else can the Lord truly exercise and prove us?


If the water-shortage called for faith in God, this new emergency called for prayer. It also teaches us about the use of means. As Joseph Hall put it: “Then only we can pray with hope, when we have done our best … And though the means cannot effect that which we desire, yet God will have us use the likeliest means, on our part, to effect it … In vain shall Moses be upon the hill, if Joshua be not in the valley. Prayer without means is a mockery of God.” But prayer there was, and it proved the more potent weapon. As John Trapp put it, “The push of Moses’ prayers did more than the pikes of all Israel besides.”

However, Moses’ intercession was not constant, it flagged and needed help. And it came to pass, when Moses held up his hand, that Israel prevailed: and when he let down his hand, Amalek prevailed (Exodus 17:11).

Clearly the outcome depended upon prayer. To maintain this intercession was vital. We do not read that Joshua needed help, but Moses in prayer did. The emphasis is on persevering prayer: “Moses hands were steady.” That won the day. Here is an important lesson for us. To pray is hard, but perseveringly to pray is harder still. However, verses 12,13 tell us that Moses was wonderfully upheld – and the battle was won, But Moses’ hands were heavy; and they took a stone, and put it under him, and he sat thereon; and Aaron and Hur stayed up his hands, the one on the one side, and the other on the other side; and his hands were steady until the going down of the sun. And Joshua discomforted Amalek and his people with the edge of the sword.


What is the equivalent help for us? Moses’ support was for his weak legs and weary arms: the stone on which he sat, and the two men who held up his arms. The “stone” can represent the promises God has given us concerning prayer. We lean the weight of our need upon these and they support us. “Aaron” is the High Priest of Israel, and the type our Great High Priest in heaven. “Hur” can stand for the Spirit of Christ, the Comforter in our hearts who strengthens our prayers.

Let us see the event in this light, and see how it applies to our prayers.


Verse 12 “a stone” … “Aaron and Hur.”

1] God’s Promises.

The stone supporting Moses’ weight illustrates how divine promises help our prayers. For God in His promises shows His goodwill toward us when we draw near to Him. For instance, consider these:

Psalm 73:23 Nevertheless I am continually with thee: thou hast holden me by my right hand.

Asaph confesses he is always in God’s presence – so close that his hand is held. Preserving grace kept him close, even while he was disillusioned over the prosperity of the wicked. Now he sees more clearly the love “that wilt not let me go.” This is our promise too – that we are always in His presence, we can turn to Him at any time, and He who holds our right hand (Isaiah 41:13) will hear our prayers.

Psalm 65:2 O thou that hearest prayer, unto thee shall all flesh come.

This truth is like an attribute of God: He hears prayer. It means that when we draw near to pray, He is already listening. “While they are yet speaking, I will hear” (Isaiah 65:24).

Song 2:14 O my dove, that art in the clefts of the rock, in the secret places of the stairs, let me see thy countenance, let me hear thy voice; for sweet is thy voice, and thy countenance is comely.

Here our Lord actually asks us to pray to Him, that He may have the pleasure of our company and voice! What greater incentive to prayer can there be than this?

Such promises – and there are many others – support us. Let not the legs of our prayers bend as we sit down on these.

2] God's Provision.

Aaron and Hur show two other ways the Lord helps us in prayer.

a] His ministering presence in heaven.

With Aaron, we think of Hebrews 4:14 “we have a great high priest, that is passed into the heavens, Jesus the Son of God.” We need the assurance that our prayers reach the throne of God. They do, through this Mediator whom God has provided.

Hebrews 9:24 tells us that He is in heaven, “there to appear in the presence of God for us.” Our Lord in the court of heaven is not just our Friend but also our Surety, who has discharged all our debts and fulfilled all our obligations. This is what He represents to the Father on our behalf. “Appear” means to manifest to the sight – He demonstrates these things to God’s satisfaction just by being there!

This has a twofold effect upon our prayers.

i] The sin in our prayers is taken away.

Again in type, we read that Aaron’s mediation was to “bear the iniquity of the holy things, which the children of Israel shall hallow in all their holy gifts” (Exodus 28:38). This comforts us greatly, because we know that, at best, our prayers are thoroughly unworthy. However, that is removed by the atonement of Him who gives them in to the Father for us.

ii] The necessary perfection is on our prayers.

His good name in heaven, representing His righteousness, is our guarantee that our prayers will be “acceptable to God by Jesus Christ” (1 Peter 2:5). When we pray in His name, it is as if our Lord says, “Yes, hear this, my Father, for my sake” (cf John 11:42). This perfecting our prayers is our Lord adding “much incense, that he should offer it with the prayers of all saints … And the smoke of the incense, which came with the prayers of the saints, ascended up before God” (Revelation 8:3,4).

We are often discouraged with our prayers, we grow weary and flag. Instead of prevailing in prayer, we are prevailed upon and we “lift up holy hands with … doubting” (1 Timothy 2:8). Yet if we could see those prayers by the time they reach our Father, through Christ, we would not recognise them. We would be astonished at how cleansed and perfect they are! Keep your dear Redeemer in view as you pray to God. Believe that your prayers speed well to the throne by Him. In this way, one “arm” of our praying is held up and we can prevail!

b] His strengthening presence in our souls.

This is by the Comforter. Our Lord in His glorified manhood is in heaven for us, but in His divine presence through the Spirit He indwells us. Paul could write in Romans 8:9 that Christians have “the Spirit of Christ” and in verse 10 that “Christ be in you.” The indwelling Comforter is the way in which our Lord is now with us (John 14:17,18). And some of that comforting ministry is to help our praying. “Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought” (Romans 8:26).

Therefore, like Hur on the other side of Moses holding up his arm, the Spirit supports us in prayer. He enlightens us and enlivens us, bringing to our hearts the truth of Christ our Mediator, and the certainty that our prayers reach the throne through Him. He also enables us to pray – suggesting things to say and words with which to say them. He draws us out, warms our heart, makes us feel God’s love. So that, as Jude writes, we are “praying in the Holy Ghost” (verse 20). As we begin to pray, He begins to help us and the second “arm” of our praying is held steady.

We have here then, a twofold help: up in heaven, and in our hearts. Our Lord is at our Father’s right hand, and at our right hand. Within the veil, and within our hearts. As the hymn concerning the Holy Spirit puts it,

Christ is our Advocate on high; Thou art our Advocate within.

This can wonderfully sustain our praying. Look to your Great High Priest, and to your gracious Comforter.


Verse 12 “and Aaron and Hur stayed up his hands, the one on the one side, and the other on the other side; and his hands were steady until the going down of the sun.” Let us see our prayers in the light of this encouragement.

1] Our secret prayer.

One proof of real religion is that we have times of daily, secret prayer. Our Lord says, “But thou, when thou prayest, enter into thy closet, and when thou hast shut thy door, pray to thy Father which is in secret; and thy Father which seeth in secret shall reward thee openly” (Matthew 6:6). It is one thing to follow the minister’s prayers in church, or to follow grace before meals – but do we pray on our own when no one else is there but the Lord? Here is the proof of real religion – a prayer life of one’s own.

If we have this, then we shall want to be sustained in prayer daily. And our “stone” – the promises; and our “Aaron” – the Mediator, and our “Hur” – the Comforter will be our help. A merciful Father who waits to hear us, a mediating Christ who never tires of treating for us, and a ministering Spirit who never wearies of helping us – the Trinity is for us in prayer. “For through him (Christ) we … have access by one Spirit unto the Father” (Ephesians 2:18).

2] Daily prayer for something or someone.

While the Lord is pleased to quickly answer our “everyday” prayers, some requests have answers that are more long-term. Such as someone’s conversion, an intractable situation, the Lord’s work, reformation and reviving grace to the Church, etc. For these, we set ourselves to ask every day, more than once a day. It is hard to keep fresh and zealous in such intercession. However, the command is, “Praying always with all prayer and supplication in the Spirit, and watching thereunto with all perseverance” (Ephesians 6:18). And we can continue steadily as we are divinely supported in the ways we have seen.

3] All the way to heaven.

“Until the going down of the sun.” At conversion, we enter God’s grace in Christ by prayer. And we live by prayer – and we continue by it until the end. We may as well cease breathing as cease praying: being alive through the new birth, we cannot cease to pray. This we will do until life’s little day ends and our sun goes down. Then the everlasting day dawns and we are in the place where there is no need of the sun, “for the glory of God (lightens) it, and the Lamb is the light thereof” (Revelation 21:23). Every prayer will then have been heard, and every victory won. We shall be at home with the Lord forever – where prayer is swallowed up by everlasting praise.

May this New Year of 2013 be marked by praying that is more “steady”, persevering, and fruitful. Then we shall know by experience what William Cowper meant,

What various hindrances we meet
In coming to the mercy-seat?
Yet who that knows the worth of prayer,
But wishes to be often there.

While Moses stood with arms spread wide,
Success was found on Israel’s side;
But when through weariness they failed,
That moment Amalek prevailed.

O Lord, increase our faith and love,
That we may all thy goodness prove,
And gain from thy exhaustless store
The fruits of prayer for evermore.

By Rev John Thackway, Pastor of Holywell Evangelical Church;

Used with kind permission of the author.

Wednesday, 1 July 2015

ME on Radio Bristol

On 30th June John Darvall of BBC Radio Bristol interviewed Naomi Whittingham, her brother Tom and their mother.  Naomi has been ill with severe ME for 25 years.

To listen to the interview go to 

Radio Bristol has put a post about ME on it’s Facebook site – go to

I don't belong to Facebook, but I am able to view the page OK.