Support Information

January 01, 2020

ME Patient Foundation

UK Foundation for those with Myalgic Encephalomyelitis

January 07, 2019

ME American Archived Files

Archived files of Maryann Spurgin

 

August 02, 2018

Disability Sector representing people with an intellectual disability

VALID is the peak organisation in the Victorian disability sector representing people with an intellectual disability. VALID is run by and for people with disability and their families. VALID has particular expertise in networking and providing information to people with disability and families across the state. VALID is committed to the vision of an Australian nation in which people with a disability are empowered to exercise their rights – as human beings and as citizens – in accordance with the United Nations Convention on the Rights of Persons with Disabilities. VALID strives to realise its vision through a range of strategies that work to empower people with disabilities to become the leaders of their own lives.

July 16, 2018

Reclaiming Chronic Illness

http://www.centreforwelfarereform.org/uploads/attachment/617/reclaiming-chronic-illness.pdf

June 22, 2018

Disabled View UK

We are Caregivers, Disabled People and Advocates, supporting each other and tackling issues faced in society. We are non political group here to help when we can.

May 08, 2018

Clinical Observations of M.E.

Breakdown of various clinical observations to help your Doctor understand the complexity of M.E.

April 27, 2018

Help Desperate Patients Get Crisis Support

Severely ill patients are unable to work, and many are denied disability. The financial crisis generated by a loss of income coupled with rising costs of medical care can force patients to forego necessary care and medication. In some cases, patients may even lose their homes and end up living in cars. In order to assist patients in need, AMMES is setting up a crisis fund to provide one-time grants to patients for specific needs. The funds can be used to purchase a wheelchair, pay a medical bill, hire home care, secure adequate housing, and other basic needs. All applicants will be required to provide written medical confirmation of their diagnosis, proof of financial need, and document the specific purpose of the grant. Where possible, a phone interview will be conducted. (Some severely ill patients cannot speak.) Any patient within the United States and its territories is eligible.  attention...

April 06, 2018

ME Advocates Ireland (MEAI)

M.E. Advocates Ireland are a small group of women whom are fighting for change and recognition of ME in Ireland.  Fighting from their beds and homes.

March 20, 2018

Blue Roses

The ME Community shares the passing of a member with a blue rose

Tears for ME can be found here:  https://www.facebook.com/pg/artzstudios1/photos/?tab=album&album_id=10152524991329513

March 16, 2018

Criteria comparison at a glance

Criteria Analysis for Fukuda 1994, SEID 2015, CCC 2003, ICC 2011

Spreadsheet  

file:///C:/Users/Wendy/Documents/Criteria%20at%20a%20Glance%20Aug%202018.pdf

February 27, 2018

"In the Expectation of Recovery"

MISLEADING MEDICAL RESEARCH AND WELFARE REFORM

by George Faulkner; Published by: The Centre for Welfare Reform

 

Foreword by Simon Duffy, Director of the Centre for Welfare Reform

This is the world we’ve created for ourselves, a world where sick and disabled people are now expected to “recognise that the sick role is temporary, in the expectation of recovery.”

February 25, 2018

Anglia ME Action - AMEA (not affiliated with American Jen Brea)

ANGLIA ME ACTION (AMEA) is a UK-based medico-political campaign. The AMEA website is designed to encourage and assist medical professionals, politicians, journalists and public to press for genuine evidence-based research, care and treatment, based upon genuine science-based patient selection criteria, for the WHO-ICD-10-recognised biomedical multi-system illness known as  Myalgic Encephalomyelitis/ME.

 

February 22, 2018

OFF THE PACE Dr Hooper

AONM CONFERENCE November 19th,  2017

OFF THE PACE

CMIs, BPS, PACE, GUIDELINES and CONSEQUENCES

Malcolm Hooper, Emeritus

Professor of Medicinal Chemistry,

University of Sunderland, UK

February 21, 2018

Thirty Years of Disdain

Long time advocates know the story of what has happened to ME over thirty years. But for the media and Congress, and for anyone new to this disease, the story is difficult to understand because it is fragmented

and obscured by misinformation and the irreconcilable mish‐mash of labels, definitions, and disease theories.   Our objective in creating this document was to compile one view of this story into a detailed, fully referenced resource.  The focus of this document is on the policy decisions and political and social forces that have held ME hostage, with a primary focus on the U.S. and on the time period from the mid 1980s through the end of 2014.  Recent events such as the release of the 2015 Institute of Medicine report on this disease, 2 are covered only

briefly.  The scientific aspects are discussed primarily in the context of the patients’ experience of

the disease.

February 17, 2018

25% Severe ME Group News Page

There are approximately 200,000 people in the UK who suffer from M.E. Some do recover. However, approximately 25% of sufferers remain long term ill and severely disabled by the disease. Many are left isolated, housebound or even bedbound by the effects of the illness. It affects people from all walks of life, all age groups and can strike when you are least expecting it. The 25% M.E. Group exists to support all who have the severe form of M.E. and those who care for them. This includes people who are housebound, bedbound and wheelchair users.

January 01, 2020

Friends 4 HONESTY ABOUT M.E.

This groups mission is to expose all the lies, misrepresentations and prejudice that surround ME (one of the misrepresentations is that it is sometimes incorrectly called CFS by people who should know better).

February 17, 2018

North Carolina & Ohio M.E./FM Support Group

Welcome to all who are dealing with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Illness, Chronic Lyme Disease, Orthostatic Intolerance, POTS, and other dysautonomia diseases. THIS PAGE IS OPEN FOR ALL TO SEE. This is done in an effort to educate the public on the difficulties of having these disabling diseases and offer resources for those who otherwise might not join a group.

February 17, 2018

ME Alliance

The ME Alliance also strongly refutes the decision to rename Myalgic Encephalomyelitis as 'CFS' and wish to retain Dr Ramsay's name M.E that has been recognised by the WHO since 1968 which classifies Myalgic Encephalomyelitis, under Diseases of the nervous system, and states that M.E. is a neurological disease.

January 27, 2018

PACE Trial Participants' Public Statements About the Trial

The following 19 accounts/examples are all of the statements that could be found from CFS patients who apparently participated in the PACE trial. They appear in various locations and were made over several years. The majority, though not all, are highly critical of the PACE trial. There is no evidence of any criticism or harassment of patients who have come forward, regardless of the content of their report. There is strong evidence of the opposite: many online comments from fellow patients express gratitude for the PACE participants having taken part in research into the disease and offer support for their shared health problems. Last updated: 5 April 2016.

January 27, 2018

Charity Organization in Fort William, Highland

Facebook Lochaber PVFSCFSME

January 27, 2018

Movies about ME

https://www.facebook.com/Me-Movies-Drama-Documentaries-1718294818230449/

January 18, 2018

“Hopefully one day, my dream is that our medical community will produce a formal apology to the patients that – not having believed them all these years – they are facing a real illness.”
~ Prof. dr. Jose Montoya (2011)

January 10, 2018

Dx Revision Watch at the domain dxrevisionwatch.com.

The concept for this site developed out of research and awareness raising undertaken throughout 2009 on a sister site around the forthcoming revisions of two important international disease classification systems:

 

*  Diagnostic and Statistical Manual of Mental Disorders (DSM)  American Psychiatric Association

 

*  International Statistical Classification of Diseases and Related Health Problems (ICD)  World Health Organization

 

The American Psychiatric Association, frequently abbreviated to “APA”, should not be confused with the American Psychological Association – both professional organizations use the acronym “APA”. Unless otherwise specified, “APA” on this site refers to the American Psychiatric Association.

January 06, 2018

Thymes Trust & Children with ME

The UK Department of Health now refers to this condition as CFS/ME.  Many doctors use the term CFS (Chronic Fatigue Syndrome). Others prefer ME  (Myalgic Encephalomyelitis) as originated in The Lancet.

This guidance concerns the Neurological condition as classified under the name of ME by the World Health Organization  "WHO" as a disease of the brain and nervous system ICD 10 G93.3.

 



 

January 05, 2018

A collection of articles by Margaret Williams and Professor Malcolm Hooper

A collection of articles by Margaret Williams and Professor Malcolm Hooper together with related documents written by other people (for example, the Countess of Mar, Professor George Szmukler, Professor Simon Wessely, Professor Michael Sharpe, as well as official reports and the PACE trial protocol). These articles have been available on the internet or elsewhere for many years but now for the first time have been brought together in one place. The intention is to provide a valuable historical resource for researchers, advocates, patients and anyone interested in the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. These articles illustrate how the "Wessely School" have ignored the biomedical science on ME/CFS for almost 30 years.

January 04, 2018

About ME Advocacy.org

ME Advocacy is a project of May12.org, a 501(c)(3) not-for-profit corporation whose mission is to raise global awareness for neuroimmune and autoimmune diseases, including Myalgic Encephalomyelitis (ME). As such, donations from USA citizens are tax deductible as allowed by law.

January 04, 2018

Hummingbird Foundation for M.E.

The site also includes: Information on how to test for and treat ME and also to understand the symptoms, history and cause of M.E.    Many different resource for patients, their families & friends as well as for doctors and other medical staff.  HFME's information is referenced and summarises the work of genuine experts in these fields.

January 03, 2018

Stonebird : the experience of Severe ME

Myalgic Encephalomyelitis is a World Health Organization - classified neurological disease that affects multiple systems of the body, causing severe disability and may lead to death. It is not a psychiatric disorder.

 

Despite the physical suffering , which is indescribably complex and tormenting, for us it has been a spiritual journey , a continual journey of learning how to cope with the limitations set by the illness and how to be greater than the confines it places upon us both.

January 02, 2018

Check list for diagnostic tests for ME

Check list of Diagnostic Tests for ME and Treatments for ME Identifying Bio-markers for the Biological Abnormalities, Dysfunctions and Infections in ME 

December 27, 2017

Born from years of frustrations in dealing with the daily issues that arise from the condition, ME/CFS Legal Resources seeks to ease the burden.   These issues cross many topics, including discrimination, bullying, abuse, insurance terminations, debt difficulties, compensation issues,  and disability issues - the list goes on.

December 22, 2017

A list of symptoms and severity you can complete for your doctor.

December 22, 2017

A list of Canadian Doctors who are aware of Myalgic Encephalomyelitis.  Covers all provinces and territories.

December 22, 2017

Note: This account draws from interviews, a close reading of a fraction of the 4608 studies that pop up (as of today; yesterday it was 4606) on a PubMed search for “chronic fatigue syndrome,” and a review of many pages of government documents–in particular the minutes and testimony from meetings of the Chronic Fatigue Syndrome Advisory Committee to the U.S. Department of Health and Human Services, one of many such panels established to provide guidance to federal health officials.

December 27, 2017

Barrister, blogger, legal scholar and P/Q psychotherapist. Living with Myalgic Encephalomyelitis (ME) since 1981. Independent researcher and patient/advocate.

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