Wednesday, 26 August 2015

Hope for Karina Hansen With Help From Save4Children


Editor's Comment: Karina Hansen, a severe ME patient, was forcibly removed from her home in 2013 and placed in a psychiatric ward - much like the case of Justina Pelletier. Her condition has been steadily deteriorating.

Reprinted with the kind permission of ME Global Chronicle.

Save4Children is a charity created by the editors of the ME Global Chronicle to help the parents of children who have been forced into psychiatric wards by authorities.

The charity works within the legal system to try to get the children released and gives financial aid to parents who are unable to pay for legal assistance. They helped in Joanne’s [a German girl with severe ME ] case and Joanne has been allowed to go home. Now they would like to help Karina Hansen

Karina is a severely-ill ME patient who has been held in a hospital against her will for 2 ½ years. Her parents are still not allowed to see her. Her condition is worse now than when she was forcibly removed in 2013.

She can no longer speak in full sentences. She sits in a wheelchair and mumbles to herself. She is allowed to wear her earplugs as she becomes very distressed when the nurses try to take them from her.

When she was first taken, she actively resisted treatment and was therefore given the diagnosis of Pervasive Refusal Syndrome. This is the same diagnosis as Joanne was given. Now Karina no longer resists treatment and the psychiatrists claim that this is improvement.

Karina has never resisted eating, which is a core symptom of PRS, so of course this diagnosis is completely ridiculous. Also, Karina is a young adult and PRS is exclusively a pediatric diagnosis.

Although it does not look good for Karina at the moment, the fact that “Joanne” has been released gives us hope. If you would like to help, please donate to Save4Children at: http://bit.ly/1NAgGFF and click on “Doneer nu”

The money that is donated will be given to a volunteer non-profit civil rights group called The Citizen’s Rights Movement (Borgeretsbev√¶gelse) that has taken up Karina’s case. CRM fights for cases that are examples of principle human rights violations and they are finding many violations in Karina’s case.

Donations you transfer specifically for Karina’s case will be solely spent on her case.

The CRM documented that many laws have been broken and are preparing cases in several branches of the Danish court system. Lawyer, Jakob Skjoldan, is a founding member of CRM and has already written two  letters to the Minister of Health asking that the violations be looked into. The ME Association of Denmark and Karina’s parents are co-signers of these letters.

The CRM is also investigating whether Karina’s state-appointed guardian, Kaj Stendorf, has a conflict of interest and should be declared ineligible to be her guardian. Kaj Stendorf was the chief of police in the city where Karina lived (Holstebro) when she was forcibly removed on Feb 12, 2013.

He retired shortly afterwards and on May 29, 2013, he was appointed as her guardian. He therefore has a personal interest in the case as it would be very bad for him if the actions of the Holstebro police are found to be illegal. And the CRM believes that many laws were broken that day.

The CRM is also investigating whether Karina’s state-appointed lawyer, Anne Grete Kampmann worked for Holstebro county before she was appointed as Karina’s lawyer. This would also constitute a conflict of interest.

A court date has been set for Aug. 31, 2015 to decide if Stendorf should be appointed as Karina’s permanent guardian. Lawyer Keld Parsberg is representing the family for this court date, but the CRM hopes to get this delayed until the question of eligibility can be investigated.

The court in Holstebro has refused to discuss any other questions about the case at the upcoming August hearing. They will not discuss if it was legal to remove her or to hold and treat her against her will. However, these issues are being investigated by the CRM.

This case is important to all ME patients. If the Danish state is allowed to forcibly remove an ME patient, take away her ME diagnosis, replace it with a psychiatric one and then experiment on her with unproven research methods, it leaves the door wide open for it to happen to other ME patients worldwide.

Until now, the CRM has been run on volunteer help, but the volunteers tell me that there is a great need to hire a lawyer that will examine all the paperwork they have collected and help them focus future work. All donations will go directly to Karina’s case. So please donate to Save4children to help us get Karina released and to make sure that this horrible injustice will not happen to other patients.

Donations will be collected at the S4C site here.

Danes can donate directly to Karina’s case here.

Please write Karina on the donation

Information about Karina and the case can be found in this and future issues of the ME Global Chronicle and at these sites:

- In English: Justicefor Karina Hansen - find info under notes.

TheCitizen’s Rights Movement – documents in Danish

New documents will be added as they become available.

Submitted by Rebecca Hansen



Monday, 24 August 2015

New Directions in Medical Understanding about Myalgic Encephalomyelitis


Margaret Williams              22nd August 2015

Background

For almost 30 years the UK psychiatric lobby (in particular, Professor Sir Simon Wessely and Professors Peter White and Michael Sharpe) have taught medical students and clinicians and have advised UK Government Departments, the Medical Royal Colleges, the Medical Research Council, NICE and the permanent health insurance industry that Myalgic Encephalomyelitis (ME) is the same as “chronic fatigue” or “chronic fatigue syndrome” (CFS) and that it is a functional somatic syndrome (ie. a behavioural disorder) that is perpetuated by “aberrant illness beliefs”, “maladaptive coping”, and “hypervigilance to normal bodily sensations”.

Despite the fact that since 1969, ME has been listed by the WHO as a neurological disorder in the International Classification of Diseases, they assert that neurasthenia would readily suffice for ME (Lancet 1993:342:1247-1248) and that ME is merely a myth (“I will argue that ME is simply a belief, the belief that one has an illness called ME”: Simon Wessely: 9th Eliot Slater Memorial Lecture, Institute of Psychiatry, London, 12 May 1994).

They have been insistent that no investigations should be performed to confirm the diagnosis because, according to them, standard tests are normal and doing any additional tests just reinforces patients’ erroneous belief that they are physically ill (Joint Royal Colleges’ Report on CFS: CR54).

They are certain that “CFS/ME” can be cured by “cognitive restructuring” and graded aerobic exercise to correct the “deconditioning” which they assert results from an irrational fear of exercise, hence Professors White and Sharpe (assisted by Professor Wessely) received over £5 million to carry out their PACE Trial in a determined attempt to prove their own belief that it is a psychogenic disorder but, despite wildly exaggerated media reporting of the alleged success of the trial by the Science Media Centre, it was universally seen to have failed, a fact which they themselves consistently refuse to acknowledge. 

They continue to work assiduously to remove ME from its neurological classification and in the meantime to claim that it has dual listing in ICD-10 – once in the neurological section but again in the mental health section (this in spite of clarification on 23rd January 2004 by the WHO that “according to the taxonomic principles governing the Tenth Revision of the World Health Organisation’s International Statistical Classification of Diseases and Health-Related Problems (ICD-10) it is not permitted for the same condition to be classified to more than one rubric as this would mean that the individual categories were no longer mutually exclusivehttp://www.investinme.org/InfoCentre%20Library.htm   www.meactionuk.org.uk

As “Science Insider” reported on 17th August 2015, there are a lot of “critically ill patients” with ME and many people – international clinicians, medical scientists and patients alike – maintain that the harm and distress caused to people with ME by the UK psychiatric lobby is incalculable, but the tide has finally turned and new directions and developments in medical science have vitiated their influence and power, for example:


1.  The US Institute of Medicine Report

The Institute of Medicine (IOM) of the National Academies was asked by the Health and Human Services (HHS), the Centres for Disease Control (CDC), the National Institutes of Health (NIH), the Food and Drug Administration (FDA) and the Agency for Healthcare Research and Quality (AHRQ) to convene an expert committee to examine the evidence base for ME/CFS.  The committee was charged with developing evidence-based clinical diagnostic criteria for use by clinicians.

Their report "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" was published on 10th February 2015 and stated: "The literature review found sufficient evidence that ME/CFS is a disease with a physiologic basis. It is not, as many clinicians believe, a psychological problem that should not be taken seriously. A primary message of the report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is ‘real’    https://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx

The website of the Department of Health and Human Services includes the following comment about the IOM committee report:  With their recommendation of a streamlined, yet evidence-based set of diagnostic criteria, the IOM committee has taken a critical step toward assisting medical providers in making a diagnosis for those with this serious and debilitating illness”.

After publication of the IOM committee report, the CDC decided to archive its “CFS Toolkit” which had recommended the cognitive behavioural and exercise interventions so strenuously promoted by the UK psychiatric lobby.

In its “Brief Report” of February 2015 that accompanied the full Report, the IOM pointed out: “Many health care providers are skeptical about the seriousness of ME/CFS, mistake it for a mental health condition, or consider it a figment of the patient’s imagination. Misconceptions or dismissive attitudes on the part of health care providers make the path to diagnosis long and frustrating for many patients. The committee stresses that health care providers should acknowledge ME/CFS as a serious illness that requires timely diagnosis and appropriate care”.


2.  The NIH Pathways to Prevention (P2P) Report

The National Institutes of Health (NIH), one of the world’s foremost medical research centres, convened a “Pathways to Prevention” (P2P) working group which on 16th July 2015 published its Report “Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”.  It is an important document, as it signifies a major change in attitude towards ME/CFS.   The Report is clear:

Strong evidence indicates immunologic and inflammatory pathologies, neurotransmitter signaling disruption, micorobiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS that are potentially important for defining and treating ME/CFS” (page 3).

Both society and the medical profession have contributed to ME/CFS patients feeling disrespected and rejected. They are often treated with skepticism, uncertainty, and apprehension and labeled as deconditioned or having a primary psychological disorder. ME/CFS patients often make extraordinary efforts at extreme personal and physical costs to find a physician who will correctly diagnose and treat their symptoms while others are treated inappropriately causing additional harm” (page 4).

"Although psychological repercussions (e.g., depression) may accompany ME/CFS, it is not a primary psychological disease in etiology" (page 5).

fMRI and imaging technologies should be further studied as diagnostic tools and as methods to better understand the neurologic dysfunction of ME/CFS” (page 10).

An integrated, systems-level approach should be followed to understand how immunologic, neurologic, and metagenomic factors may contribute to ME/CFS. Immunologic mechanisms of ME/CFS and pathways associated with disease progression must be defined and characterized (e.g., defining cytokine profiles involved in pathogenesis; studying inflammation; and comprehending the basis for natural killer cell dysfunction observed in many ME/CFS patients)” (page 12).

Many clinicians do not fully understand ME/CFS. We believe ME/CFS is a distinct disease …..Primary care clinicians will be instrumental in ensuring that patients are treated appropriately and care is optimized. Thus, a properly trained workforce is critical” (page 14).

Patients should be active participants in care and decision-making. Lessons can be learned from palliative care, such as communication and symptom management to improve the quality of care” (page 15).

Clinicians could benefit from enhanced active listening skills and increased education” (page 16).

Specifically, continuing to use the Oxford definition may impair progress and cause harm. Thus, for needed progress to occur we recommend (1) that the Oxford definition be retired” (page 16). 


(The Oxford criteria were formulated by the UK psychiatric lobby and include patients with mental disorders whilst excluding those with cardinal symptoms of ME yet claiming to select those with ME).


3. CFS Advisory Committee Meeting / US Department of Health and Human Services 18th-19th August 2015

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) on issues related to myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). Its message is unambiguous: “CFSAC recommends a co-ordinated cross-agency effort to change the narrative – from “unexplained fatigue” to an understanding of the multi-systemic nature of this disease – through use of the name Myalgic Encephalomyelitis (ME) and consistent with the messaging provided by the IOM and P2P reports”.

Quotations from screenshots of the power point at the CFSAC meeting:

1.            “Myalgic Encephalomyelitis (ME) is an acquired, chronic, multi-systemic disease…resulting in significant relapse after exertion of any sort.  The disease includes immune, neurological and cognitive impairment, sleep abnormalities and autonomic dysfunction.

2.            There is strong scientific evidence of immunologic and inflammatory pathologies, neurotransmitter signalling disruption, microbiome perturbation and metabolic or mitochrondrial abnormalities in the disease.

3.            The disease is not psychiatric in nature and should not be equated with neurasthenia, somatic symptom disorder or functional somatic syndrome.

4.            The disease is not synonymous with “chronic fatigue”, “idiopathic fatigue” or “fatigue syndrome”.

5.            Medical Education: Education and awareness is needed regarding…the evidence-based fact that this is not a somatoform or mental health disorder”.


4. Verbatim Quotations from the video of Dr Ronald Davis from The Open Medicine Institute (OMI)

Dr Davis is Professor of Biology and Genetics at Stanford University and Director of Stanford Genome Technology Centre; he is a member of The National Academy of Sciences and was a member of the Institute of Medicine Panel that was re-evaluating ME; he was also involved in a very large trauma study involving 16 universities and 100 investigators.  He spoke about his son, who is "extremely severely" ill with ME.

It’s been clear from what everybody has said before me that this is a horrible disease….It’s clear this disease is a problem medically for people, but one of the horrible things about it is that patients are often told there’s nothing wrong with them and I think that hurts an awful lot….We saw how hard that was for them, feeling so sick and yet no-one believed them.

“We will assay everything we can possibly assay … that means blood, saliva, urine, sweat, faeces, and do an extensive analysis.

This is a horrible problem, and a big one….it’s a major disease.

It’s remarkable how insidious this thing is, in the sense that people who have it don’t look sick, so nobody believes them.

The standard medical procedures that the doctor will run – liver function, kidney function etc etc –they’re fine, but if you look deeper, (my son) is not fine.

Some of the things we’ve measured are 16 standard deviations away from normal.  That’s a major problem.

We found several hundred things that are out of whack….Probably that will be the same for other people (with ME).

Physicians need to take care of the patients….Every person…needs to have some level of support”.



5. Response by Dr Ronald Davis to Grant Rejection by NINDS

The National Institute of Neurological Diseases and Stroke (NINDS) rejected the pre-application funding proposal from the OMI on the grounds that “it was not clear that the proposal falls within the mission of NINDS”.  Dr Davis’ response was unequivocal: “The mission of NINDS is to study diseases with a neurological component. CFS is clearly such a disease”.



6. Confirmation that high-ranking scientists are willing to carry out research into ME

Following the assertion that there is a paucity of scientists willing to do research into ME, in their letter of 17th August 2015 to Senator Mikulski requesting funding, Dr Ronald Davis et al wrote:

There are Nobel Laureates, several members of the National Academy of Sciences, biochemists, biophysicists, geneticists, immunologists, neuroscientists, experts in public health and infectious disease, epidemiologists, and physicians eager and ready to study this disease, were adequate funding made available”.


The Scientific Advisory Board of the OMI includes the following:

Paul Berg, PhD, Nobel Laureate, Molecular Genetics, Stanford University

Mario Capecchi, PhD, Nobel Laureate, Genetics & Immunology, University of Utah

Mark M. Davis, PhD, Immunology, Stanford University

H. Craig Heller, PhD, Biology & Exercise Physiology, Stanford University

Andreas M. Kogelnik, MD, PhD, Infectious Disease, Open Medicine Institute

Baldomero M. Olivera, PhD, Neurobiology, University of Utah

Ronald G. Tompkins, MD, ScD, Trauma & Metabolism, Harvard Medical School

James D. Watson, PhD, Nobel Laureate, Molecular Genetics, Human Genome Project (with Francis Crick, Nobel Prizewinner for solving the structure of DNA)

Wenzhong Xiao, PhD, Computational Genomics, Harvard University, Stanford University.

Monday, 17 August 2015

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.

Thursday, 6 August 2015

Dr. Andrew Wakefield Speaks Out on CDC Vaccine Science


This is an astonishing interview.  The public statements made by Dr. Wakefield here were some of the most damning I've ever heard.  He accused Dr. Gerberding and Dr. De Stefano of fraud and criminal cover-up of the truth about vaccine damage.   We are destroying the health of a generation of children through the total lack of government oversight.  It has to stop.



In this hour long discussion, Dr. Wakefield talked about his work on the MMR vaccine and bowel disease/autism, including the retribution he personally experienced.  He explained the legal issues he became involved in when parents made claims against the vaccine maker whose vaccine injured their children.  He came to the conclusion that "these [official] safety studies are totally inadequate."  He urged the use of single vaccines instead of the combined MMR vaccine, and in response, vaccine makers stopped making the separate shots.

Wakefield discussed the politics involved in this controversy and the pressure put on those who speak out.

He made the stunning statement:"The notion of protecting children against serious infectious disease using safe and effective vaccines is laudable.  Unfortunately, none of the vaccines that are currently on the schedule, in my opinion, come anywhere close to meeting those criteria, either alone, but most particularly in combination."

Wakefield was most critical in his remarks about the ethic/motivations of the vaccine industry and Brian Deer.

We owe a debt of gratitude to Stacy Francis for allowing Dr. Wakefield this opportunity to explain what happened to him and how it changed his life.

Saturday, 1 August 2015

New HOPE for You and ME

By Rich Carson


Living with one of the most devastating, disabling chronic diseases known to man is not easy, but patients like you and I can live happy, rich, vastly rewarding lives if we live with hope and the the self-discipline to take good care of ourselves. To do to this we need to empower ourselves with actionable information that we can use to help us to feel our best. And it's also critically important to acknowledge with every fiber of our being the truth of our situation, that 'this too shall pass.' We will get well; it's just a matter of time.

Breathtaking technological advances are furthering our understanding of medicine and the underlying processes involved in ME/CFS, FM and Lyme Disease—and it's happening at an ever-quickening pace. Exponential improvements in technology will soon make effective treatments and a cure only a matter of time.

My faith in finding a cure is bolstered by the simple fact that progress in technology is exponential, not linear. This means that like in Moore's Law, technology is doubling in its abilities about every 18 to 24 months. This law has held true since it was postulated by Intel co-founder, Gordon Moore in 1965. As Ray Kurzweil, the brilliant inventor and futurist, says in his illustration of differentiating exponential from linear progress, 30 steps taken linearly puts you 30 steps ahead, while 30 steps taken exponentially puts you one billion steps ahead. I'm counting on the law of exponentiality to yield a cure before we know it. Remember how long the human genome project was supposed to last? Need I say more?

Want an example of something that is the result of exponential technological progress? Take a look at your smart phone. While we may take its many amazing features for granted, its power was unthinkable only 10 years ago—make that five years ago. That's the power of exponential progress. And it's happening in medicine, too, and it's going to get patients who suffer from ME/CFS, Fibromyalgia and Lyme Disease well before we know it. I'll bet on it.

---------------------------------

ProHealth founder and CEO, Rich Carson, was diagnosed with Chronic Fatigue Syndrome in 1981. He began ProHealth in 1988 as a way to give other patients access to the supplements that proved most beneficial to him and others with ME/CFS and fibromyalgia.

A national leader in the fight against ME/CFS, Rich has been one of the top fundraisers in the United States for research against the disease since 1986, and was chosen to represent the Center for Disease Control in their $4 million Chronic Fatigue Syndrome awareness campaign. In 1997, Rich conceived and launched the Campaign for a Fair Name, which succeeded in changing the common name of the disease from Chronic Fatigue Syndrome to the name that patients prefer, ME/CFS.