Justice for Karina Hansen: A template for writing letters to Danish government officials

Letter Writing Template for Denmark officials

by Justice for Karina Hansen (Notes) on Wednesday, June 12, 2013 at 6:13pm

• To use this template just copy and paste it into your own document. There are two items you will need to fill in. They are in bold and italicized to help you find them. One is a place for you to enter your own ME experience and the other is your signature at the bottom. Thank you for helping Karina Hansen and her family!

Dear Sir or Madam:

 I am writing to you concerning the treatment being offered in Denmark to those suffering from myalgic encephalomyelitis (ME).  In case you are unfamiliar with ME, it is a debilitating physical illness that has been classified as a neurological illness by the World Health Organization since 1969.

It has been brought to my attention that a young woman with myalgic encephalomyelitis named Karina Hansen has been forcibly removed from her home on February 12, 2013 for treatment she did not choose.

Karina is at Hammel Neurocenter and being treated by Nils Balle Christensen, a psychiatrist with The Research Clinic for Functional Disorders and Psychosomatics.  Karina's parents have not been allowed to visit her despite the fact it is not permitted to prevent relatives from visiting their family members in the hospital in Denmark.  It is my understanding that human rights are to be given the highest priority.

You can find more details regarding Karina Hansen's situation at ME Association, Denmark's Facebook page at https://www.facebook.com/meforeningen.dk/notes and http://tinyurl.com/nmvpgkn

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This situation prompts many people around the world to ask:
1. Does Denmark recognize the World Health Organization code for ME?

Please note that benign myalgic encephalomyelitis is coded as G93.3 in the chapter entitled "Diseases of the Nervous System" under the subheading "Other disorders of brain."  To further clarify, myalgic encephalomyelitis is listed under diseases of the nervous system and NOT mental and behavioural disorders.
It is my understanding that any country that accepts the WHO Regulations for nomenclature is obligated to accept the ICD classification.   If Denmark accepts the ICD classification of ME as a neurological illness, than why are doctors who specialize in mental and behavioural disorders in charge of an ME patient's treatment?

2. What is the recommended treatment for ME patients in Denmark?

Myalgic encephalomyelitis can result in death without proper treatment. One well-known case is that of Sophia Mirza in England. You can find more information about her death at  http://investinme.org/Article-050%20Sophia%20Wilson%2001-RIP.htm

 
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3. Do ME patients in Denmark not have the right to choose which treatment to receive? Also do they not have the basic human rights of visitation with their family?

4. Who monitors experimental treatments to be certain that no basic human rights are being denied in cases such as these?

In order to help you understand the many challenges someone with ME faces, I would  like to share my personal experiences of dealing with ME.  (Please add your personal experience with ME and possibly any problems you have suffered resulting from any wrong treatment you have received)

Many people around the world are concerned with Karina Hansen's treatment and have signed petitions in support of her. They can be found at change.org   http://tinyurl.com/p55nxdp

 , causes.com http://tinyurl.com/au3c7t4

  and ipetition.com  http://www.ipetitions.com/petition/postcardtokarina/

  .
A video has also been made to spread awareness of what Karina is facing and can be seen here athttp://www.youtube.com/watch?v=Dk3e8IWj7M0

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All of these things show that Karina Hansen and her family have a world of support!

 I ask that you please do all within your power to have Karina Hansen's human rights restored and see that she has proper treatment for myalgic encephalomyelitis.

I understand you cannot answer any questions about Karina Hansen's case, but I would appreciate answers to the general questions about the treatment of ME patients in Denmark.


  I would appreciate your prompt attention to the matter. Thank you for your consideration.

                                                                  Sincerely,
                                                                        (your name)

Danish Health and Medicines Authority (Sundhedsstyrelsen)
Axel Heides Gade 1
2300 Copenhagen S
Denmark
Email: sst@sst.dk
Telephone: +45 7222 7400 Monday to Friday, 9:30 - 15:00.

Danish regional Office:
Statsforvalningsen Midtjylland
St. Blichers Vej 6
Postbox: 151
6950 Ringkobing

midtjylland@statsforvaltning.dk
Tele: +45 7256 8300

County Office:
Holstebro County - Mayor’s Office
Rådhuset
Kirkestræde 11
7500 Holstebro

Tlf. 9611 7500
kommunen@holstebro.dk

Psychiatrists Abuse their power, Karina Hansen Sectioned for No reason

BIG MULTIPLE SCLEROSIS BREAKTHROUGH: first treatment to reset the immune system

Phase 1 trial safely resets patients’ immune systems, reduces attack on myelin protein

June 4, 2013 | by Marla Paul:

CHICAGO --- A phase 1 clinical trial for the first treatment to reset the immune system of multiple sclerosis (MS) patients showed the therapy was safe and dramatically reduced patients’ immune systems’ reactivity to myelin by 50 to 75 percent, according to new Northwestern Medicine research.

In MS, the immune system attacks and destroys myelin, the insulating layer that forms around nerves in the spinal cord, brain and optic nerve. When the insulation is destroyed, electrical signals can’t be effectively conducted, resulting in symptoms that range from mild limb numbness to paralysis or blindness.

“The therapy stops autoimmune responses that are already activated and prevents the activation of new autoimmune cells,” said Stephen Miller, the Judy Gugenheim Research Professor of Microbiology-Immunology at Northwestern University Feinberg School of Medicine.  “Our approach leaves the function of the normal immune system intact. That’s the holy grail.”

Miller is the co-senior author of a paper on the study, which was published June 5 in the journal Science Translational Medicine. The study is a collaboration between Northwestern’s Feinberg School, University Hospital Zurich in Switzerland and University Medical Center Hamburg-Eppendorf in Germany.

The human trial is the translation of more than 30 years of preclinical research in Miller's lab.  

In the trial, the MS patients’ own specially processed white blood cells were used to stealthily deliver billions of myelin antigens into their bodies so their immune systems would recognize them as harmless and develop tolerance to them.  

Current therapies for MS suppress the entire immune system, making patients more susceptible to everyday infections and higher rates of cancer.

While the trial’s nine patients -- who were treated in Hamburg, Germany -- were too few to statistically determine the treatment’s ability to prevent the progression of MS, the study did show patients who received the highest dose of white blood cells had the greatest reduction in myelin reactivity.

The primary aim of the study was to demonstrate the treatment’s safety and tolerability. It showed the intravenous injection of up to 3 billion white blood cells with myelin antigens caused no adverse affects in MS patients. Most importantly, it did not reactivate the patients’ disease and did not affect their healthy immunity to real pathogens.

As part of the study, researchers tested patients’ immunity to tetanus because all had received tetanus shots in their lifetime. One month after the treatment, their immune responses to tetanus remained strong, showing the treatment’s immune effect was specific only to myelin.  

The human safety study sets the stage for a phase 2 trial to see if the new treatment can prevent the progression of MS in humans. Scientists are currently trying to raise $1.5 million to launch the trial, which has already been approved in Switzerland. Miller’s preclinical research demonstrated the treatment stopped the progression of relapsing-remitting MS in mice.

“In the phase 2 trial we want to treat patients as early as possible in the disease before they have paralysis due to myelin damage.” Miller said.  “Once the myelin is destroyed, it’s hard to repair that.”

In the trial, patients’ white blood cells were filtered out, specially processed and coupled with myelin antigens by a complex GMP manufacturing process developed by the study co-senior authors, Roland Martin, Mireia Sospedra, and Andreas Lutterotti and their team at the University Medical Center Hamburg-Eppendorf. Then billions of these dead cells secretly carrying the myelin antigens were injected intravenously into the patients. The cells entered the spleen, which filters the blood and helps the body dispose of aging and dying blood cells. During this process, the immune cells start to recognize myelin as a harmless and immune tolerance quickly develops. This was confirmed in the patients by immune assays developed and carried out by the research team in Hamburg.

This therapy, with further testing, may be useful for treating not only MS but also a host of other autoimmune and allergic diseases simply by switching the antigens attached to the cells. Previously published preclinical research by Miller showed the therapy’s effectiveness for type 1 diabetes and airway allergy (asthma) and peanut allergy.

The MS human trial relates directly to Miller’s recently published research in mice in which he used nanoparticles -- rather than a patient’s white blood cells -- to deliver the myelin antigen. Using a patient’s white blood cells is a costly and labor-intensive procedure. Miller’s study showed the nanoparticles, which are potentially cheaper and more accessible to a general population, could be as effective as the white blood cells as delivery vehicles.  This nanoparticle technology has been licensed to Cour Pharmaceutical Development Company and is in preclinical development.

Miller’s research represents several pillars of Northwestern’s Strategic Plan by discovering new ways to treat disease in the biomedical sciences and translating those discoveries into ideas and products that make the world a better place for everyone.

The research was supported by the German Federal Ministry for Education and Research and the Cumming Foundation.

Special award for Professor Malcolm Hooper !!!

Iime Charity

Professor Malcolm Hooper - with Ellen Piro and Eva Stormorken of the Norwegian ME Association - being presented with his special award for his tremendous work for ME over the years. En flott gest fra Norge! — at IIMEC8 - 8th Invest in ME International ME Conference 2013.

Synopsis of the 8th International Invest in ME Conference, 31st May 2013, by Dr William Weir

Rosie Cox

Notes made by Dr William Weir at the 8th Invest in ME Conference, May 2013.

Permission to repost.

INVEST IN ME

Synopsis of proceedings of 8th International Conference held on 31st May 2013. Dr William Weir FRCP (Lond) FRCP (Edin)

The main theme of this conference focused on the three burning questions which all ME sufferers want answered, namely what causes ME, what is being done to discover this cause and what treatments might be effective? What was very encouraging was the impressive cast of speakers from around the world whose scientific credentials could not be challenged. Happily, none of them were psychiatrists, as gradually the psychiatric, biopsychosocial theory of ME causation is being consigned to the dustbin of history. There is now far too much high quality scientific evidence indicating that ME is due to immunological dysfunction and many of the speakers stated this principle very forcefully.

There were four main categories of speaker. Firstly there were those who talked about the organization of studies, which included the collection and computerisation of data (such as case histories) and biological material (such as blood and other body fluid samples). Clearly, in the USA at least, work of this nature is now getting off the ground and a large effort is being made to establish a “biobank” of biological materials from patients which will be made available to researchers. Here in the UK a biobank has already been set up, based at the London School of Hygiene and Tropical Medicine to where blood samples are being sent for cold storage. 

Secondly there were the immunologists who described the immunological abnormalities seen in ME patients. One of the frustrations with ME is that, although there are always across-the-board abnormalities, those seen are never as consistent as they are, for example in AIDS where one particular type of immunologically active cell is consistently reduced. However one of the speakers came out with the opinion that: “if any doctor now thinks that these abnormalities are due to psychological disorder and that exercise is the cure, he/she should be deregistered” (He was from Australia). 

One phenomenon which is now well recognised is the “cytokine flare” which follows physical (and mental) exercise. Cytokines are substances produced by the immune system as part of a normal immune response to the presence of an invading bug, be it a virus or bacterium (or other, such as a malaria parasite). Interferon is the one most people have heard of. They make you feel ill as part of the body’s normal defence against infection. In ME however they appear to be produced inappropriately, and go on being produced in the apparent absence of a recognisable infection. Furthermore there is an abnormal increase - “flare” - after exercise which now explains the problem of post exertional malaise. Here, at last, is direct evidence that Graded Exercise Therapy (GET) is very likely to be harmful.

Thirdly the issue of a possible virus infection was addressed. This would provide a logical explanation for the ongoing immunological activity – finally identifying the metaphorical fire from which all the immunological smoke was coming. The XMRV story was reviewed and provided real insights into the complexities of identifying a “new” virus. The term “new” meaning hitherto undiscovered, as it is fully appreciated that there are probably very many undiscovered viruses out there in the biological ecosystem, often being carried silently (ie without illness) by a large range of animals, including humans. The disease -causing potential of these viruses is unknown and may have very long incubation periods with infection preceding the development of disease by many years. For example It has been suggested that Parkinson’s disease is due to such a virus, and the same may be true of ME.

As many will know, XMRV was finally recognised as a contaminant of the cultures in which attempts were being made to grow a new virus from samples taken from ME patients. The initial excitement over the discovery of XMRV was dampened when this was realized, but has not deterred the search for other viruses. To apply historical perspective, when influenza was first researched, a number of bacteria and viruses were initially but incorrectly proposed as the cause before the real villain was identified. Some very sophisticated techniques are now being used in the search for the real ME villain, one candidate being a form of retrovirus known as a “human endogenous retrovirus” (HERV). These are viruses which are already present in human genes, and usually inactive (ie not replicating). Nonetheless they probably can be turned on again and they have been postulated as causes of a wide range of diseases, including cancer and autoimmune disease. Thus ME may well be due to a HERV. 

Finally there was a presentation of the Norwegian study of rituximab therapy which shows promise in the treatment of ME. Twenty of twenty eight patients improved significantly although there was a lag period of two to three months before improvement occurred. Rituximab specifically targets the CD20 lymphocytes, taking them out of circulation but well before symptomatic improvement – suggesting that it is antibodies produced by the CD20 cells which cause the symptoms, but which require the 2-3 month period to clear from the body. This study on its own supports the immunological hypothesis of causation, 
further diminishing the psychiatric attribution of an “abnormal illness belief”.

Rituximab does however have its drawbacks. It is potentially very toxic, also very expensive and no UK doctor would be able to prescribe it for ME at present. Further studies are in progress.

Watch this space!