Saturday, 16 August 2014

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, 12 August 2014

Breaking News: Chemical Changes in Immune Cell DNA from ME/CFS Patients


SMCI Funded Research Results Announced!

We are pleased to announce the first study to report epigenetic modifications throughout the genome in female ME/CFS patients compared to a matched sample of healthy controls.  This research conducted in partnership and funded by the Solve ME/CFS Initiative (SMCI) was published today in the high impact and open access journal PLOS ONE (http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0104757).

The Solve ME/CFS Initiative launched our Research Institute Without Walls in 2010 and Dr. Patrick McGowan was one of our first grantees to use this innovative infrastructure. Together with his graduate student, Will de Vega and SMCI’s Scientific Director, Suzanne D. Vernon, they found evidence of distinct epigenetic profiles in immune and other physiologically relevant genes in a selected group of female ME/CFS patients. Will de Vega, who performed much of the work, is a PhD candidate in the department of Cell and Systems Biology at the University of Toronto. His thesis research concerns how environmental factors and ME/CFS impact immunological processes, and their effects on clinically relevant phenotypes.

Epigenetic modifications affect the way genes are turned on or off without changing the inherited gene sequences. “Knowledge about the epigenetics of ME/CFS could potentially lead to alternative treatment options for sufferers, from targeted lifestyle interventions to new pharmacological treatments”, notes McGowan. There were many epigenetic modifications in and around immune genes that affect the way these genes are regulated and expressed. These types of changes would be expected to affect immune cell function in ME/CFS patients. “This is the first in a series of exciting results coming from McGowan’s lab at the University of Toronto”, says Suzanne D. Vernon. “By understanding these epigenetic differences in the immune cells of ME/CFS patients, we can begin to decipher the molecular mechanisms of the immune dysfunction that we suspect is at the root of ME/CFS”.

McGowan started this ME/CFS epigenetic research in 2012. His quick success is a testament to the power of patient-centered research approach used by the Solve ME/CFS Initiative. “Our study would not have been possible without the funding provided by the Solve ME/CFS Initiative, patient samples from the SolveCFS BioBank, and the collaborative support of the Initiative’s scientific director Dr. Suzanne D. Vernon” says McGowan.

The Solve ME/CFS Initiative will continue to partner with McGowan and his team at the University of Toronto to further this exciting work of epigenetics and ME/CFS. This field of research holds promise for identification of diagnostic biomarkers and potential treatment and interventions for ME/CFS. For right now it is further demonstration of the indisputable biological basis of ME/CFS.

Friday, 8 August 2014

What it's like to live with severe ME


Today is severe ME Awareness Day, dedicated to those who suffer the worst effects of Myalgic Encephalomyelitis. Naomi Whittingham describes life with severe ME

By Naomi Whittingham
9:58AM BST 08 Aug 2014

Ordinarily, illness is measured in days or weeks; and for the unfortunate months or even years. Then there are those of us for whom illness, pain and suffering is measured in decades. This is my twenty-fifth year of being ill: a quarter of a century spent mostly in housebound, bed-bound isolation.

I have had ME since the age of twelve, after catching a routine virus from which I never recovered. Within months I was unable to move, speak or open my eyes. I had to be spoonfed. Constant, agonising headaches forced me to lie in a dark and silent room. I was so ill that my family and doctor feared I could die at any moment.

ME affects around 250,000 people in the UK, with 25% so severely affected that they are house or bed bound. It is now widely recognised as a neurological condition although some doctors still mistakenly believe the cause to be psychological, or that it can be cured by exercise. ME involves every bodily system and symptoms include flu-like malaise, severe pain, muscle weakness, cognitive dysfunction and acute sensitivity to sensory stimulation.

After spending my early teenage years in a death-like state, I began to slowly improve. At 37, I remain in a wheelchair most of the time and dependent on full-time care from my mother, now 63, but I consider myself fortunate. If you met me during a better spell in the day, you might not realise there was much wrong with me. You wouldn't see the collapse into bed afterwards; the desperate need to lie in silence to prevent an escalation of symptoms such as pain, muscle jerking and vomiting.

In the twenty-five years of my illness I have watched my peers become teenagers and then adults. My journey to maturity has been marked by very different rites of passage: I have had to learn to feed myself again, to speak, to sit up. I have had to re-build self-belief from the shattering effects of having a misunderstood illness. It is destroying enough to experience the collapse of every bodily system; it brings one close to ruin when the cause is suggested as lack of motivation or a wish to escape life.

I have never driven a car or made a journey unaccompanied; I have never had a job or a boyfriend or a home of my own. I will never have the children I would love. For many women this last would be a devastating blow. Swamped by so many other losses, I barely register it.

Chronic illness is a bereavement: a lengthy grieving for shattered dreams. Despite this, I am not a tragic figure. Decades of intense suffering have given me a deep appreciation of life, of the simple pleasure of a sunset or spring flowers. I have a wide network of friends with ME and those of us who are well enough communicate through email and Facebook.

Recently someone asked me what I would do if I were well for a day. The possibilities for that one, cherished day not confined to bed or a wheelchair are too numerous to comprehend. Getting out of bed unaided, stepping out into the garden, making a cup of tea, styling my hair, shopping, going to the sea for the first time in years: basic, spontaneous activities which most people take for granted.

For me and thousands of others locked in this prison, the only prospect of release lies in quality biomedical research, of which there is far too little. There are promising developments in the study of viruses and immune abnormalities, and the hope of identifying diagnostic biomarkers and eventually drug treatments. But lack of funding means that progress is slow and in the meantime lives are wasted.

I will never get my youth back; but progress in understanding ME is urgently needed, before future generations lose theirs.

Voices from the Shadows, an award-winning documentary, tells the story of several severe ME sufferers, including Naomi and Sophia Mirza, who died aged 32.

Friday, 1 August 2014

Letter from America

ME/CFS Manifesto by Llewellyn King


Invest in ME contacted Llewellyn King to ask for permission to republish this article – as it chimes so well with the views of the charity regarding progress, obstructions to progress, and the need to begin sowing the seeds of change.

Llewellyn King is executive producer and host of “White House Chronicle” on PBS, a columnist for the Hearst-New York Times Syndicate and a commentator on SiriusXM Satellite Radio.

He is the co-host of ME/CFS Alert on YouTube. king@kingpublishing.com

This article appeared in the Journal of IiME Volume 8 Issue 1 (IIMEC9 Conference Journal)

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I consider this a manifesto for the ME/CFS community. These are my thoughts, after nearly five years of watching the anguish and the neglect that surrounds this disease.

The manifesto states what I think should be done now.

And “now” is an important word.

There is a story that Winston Churchill, when he was very old and sick, summoned the gardener at his beloved country home in Kent, Chartwell, and asked him to plant an oak tree in an open space.

The gardener, looking at his enfeebled employer, swallowed and said,

“But, sir, an oak tree takes a hundred years to grow.”

“Then you'd better plant it now, hadn't you?” said Churchill.

During World War II, Churchill used this same execution imperative approach to work. Churchill used to stick little, pre-printed notes — long before the days of Post-it notes -- on his paperwork for staff that read, “Action This Day.”

One of the first things that struck me about ME/CFS, when I started writing and broadcasting on the subject, was how slow the pace of progress was, even as the suffering suggested the need for immediate action.

The second was how stingy public and private funding for research was then and is now.

I want my friends and loves, who are in the grip of a relentless affliction, whose days are torn from the calendar of hell, to be cured in my lifetime -- and I am 74. I want to be able to hold them as whole happy people; the people they were before they were struck down by an enemy they did not provoke, a monster they do not deserve, an unseen captor, a malicious jailer that takes daily life and makes it into a tool of torture and punishment.

One year, the CFIDS Association of America was able to declare proudly that it had raised $2 million.

The National Institutes of Health, a federal agency that should be pushing research, granted a paltry $5 million for ME/CFS in 2013. By comparison, in that same year, I learned that a consortium of foundations was sponsoring a green power marketing initiative at $6 million a year.

I have spent nearly 50 years writing about federal funding for energy, science and technology, and the sums of money spent has been in the tens of billions of dollars. One company gets more than $60 million year-in a year-out for nuclear fusion research -- and I see nothing wrong with that.

But when I look at the federal funding for ME/CFS research, I am aghast: It is not funded at a level that can be expected to produce results. It is, to my mind, a crime against the sick; morally, if not criminally, indictable.

"Other governments are not free of guilt for the suffering – and the United Kingdom stands out among the many offenders."

To allow the scale of suffering that attends ME/CFS, without making research on the disease a national priority, is close to wilful neglect; an abrogation of the high purposes of Hippocrates' calling.

Other governments are not free of guilt for the suffering – and the United Kingdom stands out among the many offenders

These governments have been seduced by the fraudulent blandishments of the psychiatric lobby. If a ME/CFS patient refuses to accept a psychiatric diagnosis, he or she can either be imprisoned or forced to suffer the insinuation that they are not physically sick, even if they cannot get out of bed. There are cases in Europe where patients refusing the prescribed psychiatric treatment have been imprisoned, as happened most recently to Karina Hansen in Denmark.[1]

The United States is experiencing a boom in natural gas production and the deployment of solar panels on rooftops.

These successes are the manifestation of substantial research money committed in the 1970s, and sustained since then.

Science needs certainty of support, both political and financial, to triumph.

The key is sustained funding; a splash here and a dash there just won't do -- it won't do anything. ME/CFS researchers need to concentrate on their work, wherever that work takes them, free from the stress of insecure funding.

ME/CFS deserves the level of effort that might lead to success. It is not getting it now, and it never has had it. It is appalling that Dr. Ian Lipkin, the highly respected virus hunter, is trying to raise $1.27 million through crowd funding to investigate the role of microbiome in ME/CFS. What we are seeing is a scientist forced to beg

Yet this fundamental research, with application for diseases beyond ME/CFS, is at the frontier of biomedical science.

If we, as a nation, are to believe that we are in the forefront of science, we must be in the forefront of biomedical research as well as the forefront of computers, telecommunications, materials and physics.

We almost humbled polio, and developed powerful drug therapies for AIDS

We can transplant vital organs and gave hope to the leper. The advances came neither cheaply nor easily, but they have saved lives beyond counting and eased suffering beyond enumeration.

Why not for ME/CFS? Why not?

There is eloquence in the voices of the community. But they are widely distributed and, sadly, they fall mostly on ears of those who already know them — the sick, their families and their advocates.

The voices need to be heard widely, need to be channelled and need to be focused. A million points of light won't do it. A laser, a great beam, will do it.

There are three principal reasons why these voices are not heard by those who need to hear them:

1              ME/CFS is a hard story for the media to grasp.
2              ME/CFS has no celebrity doing what Elizabeth Taylor did for AIDS, what Jerry Lewis did for Multiple Sclerosis, or what Michael J. Fox is doing for Parkinson's Disease.
3              ME/CFS has no presence in Washington.

Of the three, the last is the most critical to act on, and it is the one that would produce the most measurable result. Simply stated: Being on the ground in Washington every day is the essential step the community has to take.

To get results in Washington, you need to-see-and-be-seen in the daily life there. Letters and petitions do not have nearly the impact as a Washington denizen talking to a decision-maker in person.

Happily this would amount to one very visible person, who strolls the halls of Congress, lunches at the clubs and restaurants, like the Cosmos or Metropolitan clubs, or the Monocle Restaurant on Capitol Hill. Once, I was mentioned in the Wonkette blog because I was spotted entering Bistro B, a favourite restaurant of the powerful, and those who think they are powerful.

If your children attend one of the power schools, like St. Alban's or Sidwell Friends, contacts can be made and deals can be done at the events.

A friend of mine enlisted President Bill Clinton's help for a cause because their children went to the same school.

It may strike you as banal, but it is the Washington political game.

Learn to play it.

Washington is a society of people who are impressed with each other.

It is important to be known. If you are invited to the annual White House Correspondents' Association or Alfalfa Club dinners, you are known. The next step is to be known for ME/CFS advocacy.

Once known, the perfect advocate/lobbyist will morph into a resource, a voice for others in Washington: a source of information for congressional aides trying to understand the budget requests of agencies, and a source of information for reporters writing about diseases of the immune system

A voice in Washington puts pressure on government agencies to do the right thing, and on members of Congress to authorize and appropriate money

The advocate/lobbyist can learn, through the hearing process, about the diligence and transparency of the agencies and the quality of their operations; to see if they are doing the job or treading water, to see how transparent their operations are and the quality of professionals operating programs.

Another salutary source of pressure in Washington is the press corps. It covers not just politics but also the functioning of government.

The pinnacle of power in the corps are still The Washington Post, The New York Times and The Wall Street Journal.

But the news agencies, The Associated Press, Bloomberg and Reuters, followed by a veritable media army that cover politics and programs, including Politico, The Hill, Roll Call, National Journal, and the specialized medical publications also play important roles.

Fifty years ago, the center of media activity was New York. Now it is Washington. A professional advocate for ME/CFS needs to cultivate the media and to be comfortable with the currency of Washington and to trade in it

That currency is information.

Washington is a great information market. The successful lobbyist/advocate is, by the nature of the city and its functioning, an information broker.

The sums of money that will be needed to accelerate research cannot be calculated and could be very substantial.

Research funding, above all, needs to be sustained at predictable levels.

The pharmaceutical industry figures that a new drug can cost upwards of $1.2 billion. I mention it only to hint at the vast amount of money needed for drug research and development.

How much ME/CFS will need and for how long is an existential question?

Money stimulates research, attracts new young minds to the field and leads to success. Right now, there is so little money funding so few researchers in ME/CFS.

In the United States, that success may be a long time in coming – too  long for those for whom today will be a living hell, as yesterday was and tomorrow will be.

I figure that for as little as $1 million, a start toward a Washington  presence can be made. That would cover one advocate/lobbyist, one office and one assistant for one year; not a smidgeon of attention from a giant  lobbying firm, but a dedicated ME/CFS standard-bearer. Funding should grow within a year, as the ME/CFS cause comes out of the shadows.

I operated a small business in Washington for 33 years, and I am  confident that a new ME/CFS presence there will reverse the disease's funding fortunes at NIH, increase media awareness, and cause the big foundations to sit up and take notice. It would give ME/CFS the kind of presence that other diseases with active advocates – COPD, ALS, MS and others -- have in Washingon and the nation.

If this is not done the government will continue to ignore the case for ME/CFS. Worse, the new billionaires who are beginning to throw real money into biomedical research will not know about ME/CFS. It will be hidden in plain sight much as it has been from the wider public.

ME/CFS needs a place on the national agenda if it is to be understood and cured in reasonable time, and if the very best minds are to be attracted to the task and to stay with it.

That Churchill oak needs to be planted now, and in sight of the U.S. Capitol


Reference

1                     Karina Hansen - En dansk tragedie