MS causes damage to the nerves - Alemtuzumab drug may reverse MS brain damage

"The ability of an MS drug to promote brain repair is unprecedented" - Dr Alasdair Coles University of Cambridge

"This news will rightly bring hope to people living with the condition day in, day out" - Lee Dunster MS Society

Source: BBC report by Richard Warry, BBC News website health editor, 22 October 2008. Copy:

Drug may reverse MS brain damage

A drug developed to treat leukaemia may be a powerful new weapon against multiple sclerosis, researchers say.

Alemtuzumab appears to stop progression of the disease in patients with early stage active relapsing-remitting MS - the most common form of the condition.

The University of Cambridge study, published in the New England Journal of Medicine, also suggests the drug may enable repair of previous damage.

However, it can produce potentially serious side-effects, they warn.

And the researchers stress their work is still at an early stage.

Alemtuzumab - a type of drug known as a monoclonal antibody - was created at Cambridge in the late 1970s, and has long been used to treat leukaemia by killing off the cancerous white cells of the immune system.

The latest three-year study, of 334 patients with relapsing-remitting MS which had yet to be treated, found that the drug cut the number of attacks of disease by 74% more than the reduction achieved by conventional interferon-beta therapy.

Alemtuzumab also reduced the risk of sustained accumulation of disability by 71% compared to beta-tinterferon.

People on the trial who received the drug also recovered some function that had been thought to be permanently lost, and as a result were less disabled after three years than at the beginning of the study.

In contrast, people given interferon-beta showed signs of progressively worsening disability.

This was confirmed by brain scans in which alemtuzumab patients showed signs that their brains had actually increased in size, while the beta-interferon patients' brains shrank over time.

The researchers said the findings suggested that alemtuzumab may allow damaged brain tissue to repair itself.

However, they stress that more work is needed to confirm the effects, before the drug can be considered for widespread NHS use.

Lead researcher Professor Alastair Compston said: "Alemtuzumab is the most promising experimental drug for the treatment of multiple sclerosis, and we are hopeful that the phase three trials will confirm that it can both stabilise and allow some recovery of what had previously been assumed to be irreversible disabilities."

Auto-immune disease

MS is caused by a fault in the body's immune system which leads it to attack nerve fibres and their protective insulation, the myelin sheath.

This damage prevents the nerves from 'firing' properly, and then leads to their destruction, resulting in physical and intellectual disabilities.

Alemtuzumab works by destroying a type of white blood cell called a lymphocyte, which, in MS, plays a key role in causing the damage associated with the disease.

Effectively, this shuts down the immune system, allowing it to re-boot without the original fault.

Dr Alasdair Coles, who also worked on the study, said: "The ability of an MS drug to promote brain repair is unprecedented.

"We are witnessing a drug which, if given early enough, might effectively stop the advancement of the disease and also restore lost function by promoting repair of the damaged brain tissue."

During the trial, 20% of patients treated with alemtuzumab developed either an under-active or over-active thyroid gland.

A small number developed a low platelet count, rendering them vulnerable to bleeding, and in one case this led to a fatality.

However, the researchers stress this complication can be easily treated if recognised early.

Lee Dunster, head of research at the MS Society, said: "This is the first drug that has shown the potential to halt and even reverse the debilitating effects of MS and this news will rightly bring hope to people living with the condition day in, day out.

"More work is needed to prove the drug's long-term effectiveness and we are very much looking forward to the results of the next stage of this important research."

Professor Paul Matthews, of Imperial College, London, described the trial as "compelling".

However, he said: "Alemtuzumab was associated with severe adverse events in a small proportion of the patients, suggesting that it would be unsuitable for any patient except those with very aggressive forms of the disease."

S.O.S. Please email ME/CFS Watch - 2 years of emails lost

Here in England on Wednesday, 15 October 2008, two engineers from British Telecom IT Support were here for a specially ordered appointment to ensure a smooth changeover from my current ISP, Virgin Media, to BT Broadband.

Sadly, it turned into a 3-hour job. The engineer, after deleting the Virgin email address from my PowerBook G4 (Mac OS X 10.3.9) said it had never occurred to him that the contents of my AppleMac drafts email folder would also be deleted, along with the contents of my folders for sent and incoming emails. In their experience, such a thing had never happened before.

Groan. Over the past 3-4 weeks, on top of the 3 hours Wednesday, I've spent what seems like a total of 20 hours on the phone to BT, from here to Scotland and India, ever since initial call to BT's broadband sales office.

BT couldn't set me up for broadband for a few weeks resulting in connection to BT dial-up service in the interim - for which I almost got charged £18 for Day One if I hadn't checked tarriff for the 'Pay As You Go' option that BT signed me up to, instead of the 'Anytime' package costing £1 for first month.

Not to mention the ordeal I went though trying to obtain an internet cable for a few weeks of the dial up service. And then the service itself. By the end of Day One, BT dial up Tech Support told me the loss of connection every few minutes was nothing to do with them and blamed my internal modem as being corrupted and broken. Not true, I discovered next day.

Yesterday morning, I awoke feeling gutted, bereft and exhausted over the whole experience. More than one thousand draft items and scores of photos for future blogposts which, despite Apple's best efforts (a further 1-hour ordeak over phone) are no longer recoverable. All gone. Vanished. Forever. Nightmare.

Years of hard work and precious energy wasted. I feel sad at losing so much, just when I was getting back into the swing of things after ten bereavements (including my mother and three longstanding friends) and the toll it took on my health.

Chin up. Worse things happen at sea. I'll endeavour to continue blogging while working on piecing together lost drafts, updating email address in my blogs. re-subscribing to news alerts, etc.

Right now, the thought of having to find all the pieces to put back together again, and recall people's latest email addresses that may or not be in my computer's address book, is too overwhelming.

If you have ever emailed me, no matter how long ago, please email me NOW with copy of last email or just a few words or, better still, photo of your pet, to enable me to save your address safely in a new folder for easy future reference.

My new BT email address is now in the sidebar here at ME/CFS Watch.

I'm always here, with my cat Ophelia, happy to receive emails that are not spam. It still pains me to be so slow in replying. I fear that taking days, weeks, months, even years (!) to reply puts people off from staying in contact.

P.S.
Mostly I am sad at losing photos of pets belonging to some of my favourite bloggers. I adore cats and had collected some pretty special photos for a Cat Watch Blog that I'm creating as a place for me to visit when the going gets tough at my watch blogs and I feel disappointed in human beings.

If you know the personality of any cat (or dog, especially if it gets along with cats) and have a photo of the pet, please send it to me so I can create a little story for posting (with your permission and credit/link to you) at the most suitable of my three new blogs (currently under construction) namely: Cat Watch Blog, Heavenly Cats, Pets in Heaven.

Here's looking forward to learning about cats living in different parts of the world. I'm curious to know if cats all over the world have same habits and act in same way, or behave differently from mine here in England. If anyone ever thinks of sending us a greetings, especially over Christmas and New Year, anything for my pet blogs would be cheerfully received and warmly appreciated. I promise to reply with some observations and questions about your pet's charm and character.

Having said all that, I'm bracing myself for the possibility that no-one will take notice of this post although, even during blogging breaks, my network of blogs continue to receive thousands of visitors and page views. I have no idea of how many people read my blogs via a news reader and never visit in person. I don't even know if the feed for my Sudan Watch blog still works. It no longer works in my newsreader, NetNewsWire.

Hey is anybody out there? Please say something!

With love from Ingrid and cat Ophelia, posted by the sea on south west coast of England, UK xx

An edited version of this post will appear in some of my network of blogs, ie: Sudan Watch, Congo Watch, Ethiopia Watch, Niger Watch, Uganda Watch, Egypt Watch, Kenya Watch, China Tibet Watch, Tehran Watch, Syria Watch, ME AND OPHELIA.

Deployed peacekeeping veterans with Post Traumatic Stress Disorder (PTSD) have significant impairments in health-related quality of life

Nine years ago today, I was struck down with a flu like viral illness from which I never recovered. After the initial six months, my profoundly disabling condition was diagnosed by a Consultant Psychiatrist as a severe form of Post Viral Fatigue Syndrome (PVFS), also known as Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS).

Still, to this day, there is no effective treatment or cure. In my experience, the condition is similar to Multiple Sclerosis (MS), Post Traumatic Stress Disorder (PTSD) and Gulf War Syndrome (GWS).

Over the past nine years my energy level has increased from one half hour to two hours per day. I am still virtually housebound. Last March, I was able to attend my mother's funeral. Next month, I am scheduled to attend a long awaited appointment with a CFS Consultant. Several years ago, I was bedbound for two years.

The following definition of ME is from a paper I wrote with a very dear friend (recently departed, God rest his soul) in March 2003:

Myalgic Encephalomyelitis - ME

Evidenced by muscle pain, with inflammation of the brain and spinal cord, ME has been known for half a century as 'a-typical polio'. The symptoms of extreme lassitude, and the swift onset of exhaustion that characterise the disease, also caused it to be known for many years as 'chronic fatigue syndrome' or CFS. It was only classified by the World Health Organisation of the United Nations as a neurological disorder in 1969.

The disorder is triggered by a virus infection that occurs worldwide in epidemic and pandemic form: seasonally and in selected geographical areas. It affects about 1% of the British population and there is no known cure. While three-quarters of those who become infected do not present advanced symptoms, 25% of ME sufferers are chronically affected with severe illness and pain, causing them to become profoundly disabled and very largely housebound. The condition can last throughout life without remission of any kind.

Doctors and sufferers generally agree that the worst effects of the disease can be 'managed by strict adherence to conservation of energy, reduction of stress and simplification of work: augmented by education, with practical and economic support'.

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We're not lazy nor crazy, tiredness is the least of our problems

This post today, 10 October 2008, here at ME/CFS Watch, is to help raise awareness of the plight of military personnel suffering from ghastly life-wrecking Post Traumatic Stress Disorder (PTSD). Below are some excerpts taken from Science Daily online. More on this topic at a later date.
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Peacekeepers are exposed to traumatic events which they are helpless to prevent under the United National rules of engagement

While the relationship among Post Traumatic Stress Disorder (PTSD) and physical and mental health impairment is well developed in combat veterans, it is less studied among the deployed peacekeeping veteran population.

Peacekeepers are exposed to traumatic events which they are helpless to prevent under the United National rules of engagement, which state soldiers must show restraint and neutrality. The feeling of being unable to control a situation at the time of trauma is an important risk factor for developing PTSD.

More from ScienceDaily.com (Dec. 15, 2007):

Canada’s peacekeepers suffer similar rates of Post-Traumatic Stress Disorders (PTSD) as combat, war-zone soldiers, according to a London, Ont. research team.

Psychiatrist J. Donald Richardson and his co-investigators also found that PTSD rates and severity were associated with younger age, single marital status and deployment frequency.

Vietnam Combat Linked To Many Diseases 20 Years Later

According to Boscarino, of the 1,399 Vietnam veterans studied, 24 percent (332) were diagnosed with PTSD sometime after military service, and nearly all cases of PTSD in the study resulted from exposure to heavy or very heavy combat in Vietnam.

He said his research and others' suggest that those with PTSD often have altered neuroendocrine and sympathetic nervous systems. Disturbances in these key body systems are the main reason for increases in a broad spectrum of diseases among combat veterans, he said. His research also uncovered abnormal immune functioning and clear medical evidence of coronary artery disease among the veterans studied. Read more at ScienceDaily (Nov. 26, 1997)

Post-Traumatic Stress Disorder May Result In Heart Disease

Combat veterans with post-traumatic stress disorder (PTSD) appear to be at higher risk for coronary heart disease (CHD), according to a recent study of 4,462 male U.S. Army veterans.

"We believe that this research suggests a clear, definitive linkage between exposure to severe stress and the onset of coronary heart disease in humans," said Boscarino. Read more at ScienceDaily (Nov. 10, 1999)

PTSD Causes Early Death From Heart Disease, Study Suggests

A new study sheds light on the link between PTSD and heart disease. Vietnam veterans with PTSD suffered higher rates of heart disease death than veterans without PTSD.

The more severe the PTSD diagnosis, the greater the likelihood of death from heart disease, the study showed. Read more at ScienceDaily (July 8, 2008)

Whether combat or peacekeeping, PTSD impacts veterans' well-being

Deployed peacekeeping veterans with PTSD have significant impairments in health-related quality of life according to research by Dr. J. Donald Richardson of The University of Western Ontario and his co-investigators.

The research, published recently in the Canadian Journal of Psychiatry, found anxiety disorders such as PTSD are associated with impaired emotional well-being, and this applies just as much to peacekeeping veterans as to combat veterans. "This finding is important to clinicians working with the newer generation of veterans, as it stresses the importance of including measures of quality of life when evaluating veterans to better address their rehabilitation needs," says Dr. Richardson. "It is not enough to measure symptom changes with treatment; we need to objectively assess if treatment is improving their quality of life and how they are functioning in their community."

Richardson is a consultant psychiatrist with the Operational Stress Injury Clinic at Parkwood Hospital, part of St. Joseph's Health Care, London and a psychiatry professor with the Schulich School of Medicine & Dentistry at Western. His team studied 125 male, deployed Canadian Forces peacekeeping veterans who were referred for a psychiatric assessment. The average age of these men was 41, and they averaged 16 years of military service. The most common military theatre in which they served were the Balkan states (Bosnia, Croatia, former Yugoslavia, and Kosovo), with 83 per cent having exposure to combat or a war zone. Read more at ScienceDaily (Oct. 3, 2008)

Post Traumatic Stress Has Tripled Among Combat-exposed Military Personnel

Concerns have been raised about the health impact of military deployment. Studies have estimated as many as 30% of Vietnam War veterans developed post-traumatic stress disorder at some point following the war and, among 1991 Gulf War veterans, as many as 10% were reported to have post-traumatic stress disorder symptoms years after returning from deployment. Read more at ScienceDaily (Jan. 17, 2008)

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Postscript

I would be interested to hear from anyone affected by above issues. Feel free to email me anytime and forgive me if I am slow to respond. Note, my current email address will cease on November 28, 2008 because I am switching my ISP to British Telecommunications (BT) Broadband.

With love from me and my cat Ophelia xx

[Afterthought: As my network of blogs receives thousands of regular visits from military, health orgs, unis, govts, etc., I have decided to cross post this whole entry at some of Sudan Watch's sister sites: Congo Watch, Uganda Watch, Ethiopia Watch, Niger Watch, Kenya Watch, Russia Watch.]