The London School of Hygiene and Tropical Medicine has announced that the Bio Bank project, which is lead by Dr Luis Nacul with Dr Eliana Lacerda and Erinna Bowman has been awarded a grant worth over £1 million over three years, by the National Institutes of Health (NIH) in the USA.

The press release states –“The grant from the NIH will enable important research on the immunology and genetics of ME/CFS, which may lead to the discovery of much needed disease biomarkers. It will also help to expand the Biobank to store samples from over 500 participants, including almost 300 patients and over 200 controls (comprising healthy controls and people with multiple sclerosis), which will be made available to medical researchers internationally.

 Dr Eliana Lacerda from the London School of Hygiene & Tropical Medicine, one of the lead researchers on the project, said: “At least one in every 500 adults in the UK is affected by ME/CFS at any one time, as well as a smaller but significant proportion of children. The NIH grant provides a huge boost to the Biobank, which will enable more research into the causes of ME/CFS and ultimately help those affected.”

Erinna Bowman, one of the project researchers, said: “A key component of our project is its longitudinal design, which includes participant follow-ups over an extended period of time. This longitudinal aspect makes the Biobank an even more valuable resource and presents new opportunities for scientific discovery in the years to come.”

See more at: http://blogs.lshtm.ac.uk/news/2013/06/28/uk-mecfs-biobank-project-awarded-1-million-grant/#sthash.E2HBwCUy.dpuf

It is wonderful to  hear that these dedicated researchers have been awarded such a substantial sum for their relevant and valuable research.  It is clear that the work will be directed at helping people who have ME, also called CFS in the USA, and not the larger percentage of people who have chronic fatigue. Their 2011 research into prevalence of ME/CFS stated “Our study yielded a minimum prevalence in primary care of 0.2%” This equates to one in 500 or around 126,000 people and so is only about half the number usually given of 250,000 in the UK . It is  also interesting to see that these LSHTM researchers, along with most other researchers, consider that ME is less prevalent in children than in adults. That is very good news for children and their families.

The research group at LSHTM is called CURE-ME and more info is at – http://www.lshtm.ac.uk/itd/crd/research/cure-me/

Their 2011 research into the prevalence of ME/CFS can be found at http://www.biomedcentral.com/1741-7015/9/91

Naomi, who made a substantial and heart-rending contribution to ‘Voices from the Shadows’, has had a very moving half page article published in the Daily Telegraph paper today – June 24th. She writes vividly about her own experiences and more extensively about one of her friends, Emily, who died last year after suffering horribly – both from very severe ME and as a consequence of her experiences during various hospitalisations. One thing Naomi says in the article is particularly shocking –  ” Many of us have been so traumatised by being in hospital that we would risk our lives rather than consider admission.” What a tragic consequence of the terrible misconceptions about ME still held by many professionals and the media. It is good to see the Telegraph making an effort to correct some of the prejudice generated by media trivialisation of what can so often be such a very severe physical illness.

Naomi’s  article can be found here – http://www.telegraph.co.uk/health/10137694/Emily-didnt-only-have-ME.html

NEWRY & MOURNE ME/FMS SUPPORT GROUP NEWS UPDATE –

All patients in N.I. can now inform and ENCOURAGE their consultants and doctors that free information on Myalgic Encephalomyelitis is available on request.

Newry & Mourne ME/FMS Support Group thank the Health Minister’s Office for their continued support as they have done previously when informing all 353 GP Surgeries about the Medical Professionals Conference in March.

This is how it appears on the NHS Intranet …………

Raising Awareness and Demystifying M.E. (Myalgic Encephalomyelitis)

FREE copies on request of the 60 minute documentary ‘Voices from the Shadows’ – Winner 2011 of The Mill Valley International documentary Audience Award.

“Voices from the Shadows is the most important and significant film on paediatric ME that has ever been produced”
Prof. Leonard Jason Director of the Centre for Community Research DePaul University Chicago

We also offer FREE copies of The International Consensus Primer for Medical Practitioners
“The latest most comprehensive guidelines for medical practitioners for Myalgic Encephalomyelitis. This consensus document is by a large team of ME medical and research experts, it provides ground breaking international perspective. Based upon the diagnosis and treatment of over 50,000 patients with ME, peer reviewed publications and a collective of over 500 years of experience.”

The recent MEDICAL PROFESSIONALS CONFERENCE. ‘Future NHS services for ME/CFS patients in Northern Ireland’ hosted by the group was accredited and awarded 4 CPD points by The Royal College of Physicians of London.

To request your free copies, please contact  newryandmourne.me.fms@live.co.uk

NEWRY & MOURNE ME/FIBROMYALGIA SUPPORT GROUP
Scientific Adviser, Dr. Vance Spence, ME Research UK
Medical Adviser, Dr. William R.C. Weir, FRCP (Lond) FRCP (Edin)

A report of the 8th Invest in ME International Conference 2013 – Infection, Immunity and Myalgic Encephalomyelitis – Mainstreaming ME Research – Clinical and Research Updates, written by Dr Ros Vallings  who is medical adviser to the Associated New Zealand ME Society (ANZMES) and secretary of the IACFS/ME. This is available on there website at http://www.investinme.org/IiME%20Conference%202013/IIMEC8%20Conference%20Report.htm    DVDS of the conference and of previous conferences can be ordered from IiME

dx revision watch has published more information about Karina’s plight and possible help you can give. At – http://dxrevisionwatch.com/2013/05/11/something-rotten-in-the-state-of-denmark-karina-hansens-story/

ME Research UK posted a message on their Facebook page which is copied below. What is particularly significant to me is not just their confirmation of ME as a severe physical illness, but that they state a prevalence of  around 200,000 people in the UK. This is close to the figure given in the film which applies to the illness suffered by the people in the film.

Although 200,000 is a high incidence for an illness, it is way smaller than the spectacular figures for ‘CFS or ME’ given by Esther Crawley. These  were widely publicised and are given on the Bristol University website  as a prevalence of 1-2% – which is 6000,000 to 1.2 million people in the UK.  http://www.bris.ac.uk/news/2013/9313.html  The CFS/ME Research Collaborative gave a figure three times larger than MERUK, claiming over 600,000 people were affected.

It is important to remember that illnesses with completely different prevalence rates can not possibly be the same illness. They do not have the same signs, symptoms or causes and a ‘one size fits all’ treatment approach will have life destroying consequences for some people, as the film shows. Patients are then blamed and abandoned because they do not fit the officially promoted view!

 ME AWARENESS WEEK 2013  – Let’s be Aware of the Science of ME!

Posting taken from ME Research UK Facebook page ME Research UK

The past 20 years have seen significant progress in the scientific understanding of ME.

The major findings are:

• Inflammation and immune activation are involved. The evidence of chronic T cell activation, increased cytokines, raised oxidative stress, and low natural killer cells point to a chronic state of low-grade immune upregulation.

• Infection is important. Illness starts with an acute, infectious-like episode in many patients. The main agents implicated in causing or maintaining the disease include enteroviruses (such as coxsackievirus), Epstein-Barr virus, cytomegalovirus and human herpes virus 6.

• Neurocognitive abnormalities are prevalent. It is well established that cognitive problems – mainly with memory, attention/concentration and reaction time – frequently occur.

• Endocrine (hormonal) abnormalities can be found. Hypothalamic-pituitary-adrenal axis dysfunction is a well-recognised feature.

• Psychiatry is not the answer. We know that the illness is not a form of depression, nor a primary psychiatric condition. As in other chronic diseases, psychological interventions can help some people to cope and to manage their symptoms until a cure is found.

• Genetic factors play a part, as shown by family and twin studies.

• Neurological abnormalities can be detected. There is good evidence of autonomic nervous system dysfunction, including ‘orthostatic intolerance’ which causes problems on standing. Also, brain structure and blood flow abnormalities have been identified, and central sensitization, due to an abnormal increase in the firing of nerve cells in the spine, may be important.

• Muscle function is impaired in some patients, with abnormalities to both skeletal muscle and cardiac ‘bioenergetics’.

• Symptoms are serious, and chronic illness is common. We now know that the most common symptoms of ME – including pain, sleep disorders and problems with vision – are day-to-day challenges affecting the quality of life of patients, most of whom endure long-term chronic illness.

• Prevalence is high. Epidemiological studies show that ME – under its many different names, such as postviral fatigue syndrome, ME/CFS, chronic fatigue syndrome, chronic fatigue immune dysfunction syndrome etc. – affects around 200,000 people in the UK and 1 million in the USA. This makes the disease more prevalent than multiple sclerosis, systemic lupus and HIV infection.

Biomedical research has made significant progress, but imagine what could be done in the next 20 years by a concerted effort to fund programs of research across the globe!

James LeFanu starts an article  in the Telegraph May 12th. by saying “While it may require considerable determination and persistence from those with chronic illnesses to receive appropriate help, those lucky enough to be fit and healthy are at constant risk of being checked and screened into patienthood or treated for conditions they do not have.”

He gives a mention to ‘Voices’ and how to buy the dvd, and particularly mentions children with CFS/ME “The difficulties many parents may encounter in obtaining satisfactory treatment for their children is explored in the film ‘Voices from the Shadows’, which can be obtained as a DVD from the website voicesfromtheshadowsfilm.co.uk “

It is interesting to read that even though Esther Crawley now diagnoses a staggering  1% of secondary school children with CFS/ME ( apparently those who missed an unexplained 6 days of school in a 6 week term were included ) James Lefanu points out that “Treatment remains regrettably unsatisfactory, as Dr Esther Crawley, a Reader in child health at Bristol University who organised the study acknowledges, noting the standard regime of graded exercises and cognitive behavioural therapy is only “moderately” effective.”

It would seem that Crawley is diagnosing way more children than anyone would have dreamed of as having CFS/ME but she also admits that standard treatment is only ‘moderately effective‘. The treatments she is referring to – CBT and GET for those well enough to attend clinics  – were assessed in the  PACE Trail to have a ‘success’ rate  of around only 15%  above standard medical care. (In case you were wondering what standard medical care is, I recently heard Simon Wessely describe it to a large room full of doctors, as ‘being nice to patients’!!!!)

Chris Snell speaking at the  FDA workshop   (2nd day panel 3 )  pointed out that using the only objective criteria in the trial (the 6 min walk test, which was completed by only 61% of participants) after 52 weeks of treatment patients improved their speed on average from around 1.9 miles per hour to 2.3 mph over a six min. period. This is a level of unfitness still so severe that if they were being considered for a heart transplant they wouldn’t be considered likely to survive the surgery!

Yes, this really would sound ‘regrettably unsatisfactory’ to most teenagers, and adults too!  These desperate results for the only recommended treatments in the UK is in extraordinary contrast to Esther Crawley’s glowing enthusiasm for her work helping young people.  At a meeting of doctors in Bristol last March, she  enthused about what a wonderful, enjoyable and easy job she has – working with these wonderful children and teenagers who are so grateful to her for her what she has to offer!

What an extraordinary discrepancy there is between different accounts of what constitutes having these different  illnesses, illness prevalence, recovery and the success or failure of treatments! If you put on rose tinted specs you see CFS/ME and recovery everywhere! but if you take them off you might see the tragedies like those shown in Voices – the hidden and dismissed suffering that continues while such confusions hinder research  and understanding.

http://www.telegraph.co.uk/health/healthadvice/jameslefanu/10052636/Doctorys-diary-the-less-doctors-do-the-better-for-everyone.html

May is a busy month with five screenings of Voices from the Shadows across three continents.

On ME Awareness day May 12th there is a screening in Osaka, Japan. Arranged by Kansai CFS Association.
May 11th a screening in Tokyo for the ‘Tokyo Medical Practitioners Association’.
May 17th Rome, Italy The Associazione Malattie Ambientali Reciproco Aiuto will be showing ‘Voices ‘at the end of their national medical event ” Emergenza malattie ambientali. Sato dell’ arte diagnostico e therapeutico.”
May 22nd Tokyo – a screening at the Parliament Buildings organised by Japan ME Association.
May 29th Edmonton, Canada organised by the ME Society of Edmonton.
In Japan there have been newspaper articles about ME/CFS and the screenings as well as TV coverage.

An article from Asahi Shinbun about CFS and “Voices from the Shadows”.

The following is the summary translated by Masako Mark.
“It explains what CFS is and how it lacks medical and welfare support. The journalist talked to one of the patients living in Okinawa who contracted the illness two years ago after having influenza. He no longer could work, but the doctors couldn’t find anything wrong with him. He was told it was psychological and he would be better if he just rested. He got much worse after that, and finally was diagnosed by Dr. Kuratsune in Osaka. He had to move from Okinawa to Osaka and rent a small apartment with his wife and kid to get the proper treatment,  since there was no one who could treat him in Okinawa. After having Chinese herbal treatment called Kampo, he is now able to use computer again.

Dr. Kuratsune says that ” since doctors can’t find any irregularities in normal tests, they think that the patients are just simply tired. However, the recent studies with a special CT scan show that there is inflammation in the brain and he thinks that stressors such as the virus infection or over-exhaustion trigger the illness. He is trying to establish a  diagnostic system based on the activity level of the Sympathetic nervous system and Parasympathetic nervous system.
The British ME/CFS documentary movie ” Voices from the Shadows” will be screened  on May 12th by Kansai CFS Association. ”  The movie depicts the CFS patients’ agony from the illness as well as from misunderstanding. ”

The programme for the The Associazione Malattie Ambientali Reciproco Aiuto screening in Italy.

Severely-ill ME patient held in hospital against her will. Karina Hansen, 24, was forcibly removed from home almost 3 months ago and committed to a hospital. Her parents recently held a meeting with a Danish parliament member, Liselott Blixt, to try to get answers. Below you can read about the day she was taken.
Karina suffers from severe ME (Myalgic Encephalomyelitis) and has been completely bed-ridden since 2009. ME is a neuro-immune disease that usually starts after an infection. The hallmark of the illness is intolerance for activity, called post-exertional malaise. You can read about severe ME here: http://www.stonebird.co.uk/symptoms.html

Karina forcibly removed.

On Feb 12th 2013, 5 policemen from Holstebro county, Denmark, came to Karina’s house and forcibly removed her from her bed. There were also 2 doctors, a locksmith and 2 social workers present.

Karina called for her mother’s help, but her mother was blocked by the police from aiding her. Karina used her mobile phone for the first time in years to call her mother, her father, her cousin and her sister, Janni. Karina is so ill that she can usually only speak in one or two word sentences, but during her removal she managed to call her father and say: “Help Dad, in my room”, and to her sister: “Help, Janni, I don’t know where they are taking me”. Karina’s mother could not answer her phone because she was surrounded by policemen.

Karina was then driven to a hospital in an ambulance. Her parents were not told where Karina was being taken or what reason they had for taking her. No paperwork was given to her parents. Later that day, they got a phone call and were told that Karina was at Hammel Neurocenter and that someone would call them every day at 10 a.m. to tell them how Karina was doing. They were also told that no one could visit Karina for 14 days.

On the morning of Feb. 13th, Karina managed to call her mother from her mobile phone. She said: “How can I get out of here? I can’t take this”. (”Hvordan kan jeg komme væk herfra? Jeg kan ikke klare det.”) Then the connection was cut.

A few days later, Karina’s parents got a letter from a psychiatrist, Nils Balle Christensen (NBC), which said he would be in charge of Karina’s treatment at Hammel Neurocenter. He also wrote that because “of her condition”, Karina was not allowed visitors for 14 days. That ban on visitors was later extended to three weeks because NBC was on vacation.

Nils Balle Christensen works at The Research Clinic for Functional Disorders and Psychosomatics. He and his boss, psychiatrist Per Fink, believe that ME is a functional disorder. In Denmark, a functional disorder is understood to be a psychosomatic illness. The treatments the clinic recommends are: exercise, (GET), cognitive behavioral therapy (CBT) and anti-depressants. The psychiatrists at this clinic have no experience with severely-ill ME patients and we fear that Karina is being treated incorrectly and that their mistreatment of her will lead to a severe and permanent worsening of her condition.

Karina’s parents have not seen their daughter since Feb. 12th

Karina’s parents and sister were at the Neurocenter on April 1st to try to visit Karina, but the parents were not allowed to see her. Karina’s sister, Janni, who is a nurse, was allowed to see Karina for a few minutes. A staff member followed Janni into the room. Janni said that Karina was extremely pale, was not able to talk, and did not show signs she recognized Janni. Janni often saw Karina when she was at home as she helped their mother care for Karina. In Janni’s, opinion, Karina’s condition is worse now than before she was hospitalized.

Why was Karina forcibly removed?

Karina’s parents and lawyer have still not received any official paperwork from any government body or doctor about the reason for Karina’s removal.  They have not received a treatment plan or copies of Karina’s journals. No charges have been made against her parents. This case has never been heard by a court. Karina’s parents do not know when/if they will be allowed to see her or when/if Karina will be allowed to come home. Karina’s parents and her lawyer have power of attorney for Karina, but this is being ignored. The regional state administrations for Mid-Jutland (Statsforvaltningen Midtjylland) are trying to appoint someone from their office as a guardian for Karina.

The only information the family receives about Karina comes from a head doctor from Hammel Neurocenter, Jens Gyring (JG). He now calls Karina’s father twice a week and tells him how Karina is. But the parents have a hard time trusting what is being said because they get conflicting information. NBC says Karina is improving every day, but JG says there is no change. Her sister thinks Karina is worse. JG says he is taking all of his orders about Karina’s care from NBC and that the treatment given is a rehabilitation program.

There are many unanswered questions, such as:

Which government body gave the order to remove Karina from her home and which doctor signed it?

What law was used to remove Karina?

Why are the parents and the lawyer not allowed to see any paperwork about the case?

Why are the parents not allowed to visit?  Are there any charges made against the parents?  Karina’s mother was paid by the county to take care of Karina and there was never any report of neglect. After Karina was taken, her mother was fired from her job on the grounds that the job was no longer needed.

What is the treatment plan for Karina? The hospital requires that a treatment plan be made on admission.

Why all the secrecy?

Thanks to all who have sent a postcard to Karina. I will be posting more information and updates soon.
Rebecca Hansen

ME Association, Denmark

reh@me-foreningen.dk

This account is re-posted with permission – from  https://www.facebook.com/notes/me-foreningen-me-association-denmark/update-on-karina-hansen-english-may-9th-2013/374675809309189

We now have dvds (with optional subtitles) available to be borrowed by organisations and charities wishing to screen Voices from the Shadows. Please contact us if you wish to organise a screening.