Friday, December 28, 2007

More on ME/CFS and Polio


27 December 2007
'Don't just dismiss this link with ME and polio''

Victoria Lambert's appreciation of poliomyelitis and post-polio syndrome
(Good Health) should have included the fact that ME and polio are almost certainly sister diseases, caused by the same family of viruses. Ten years
ago, in my book ME: The New Plague, I argued that ME was a persistent viral
infection related to poliomyelitis. When my study of ME in schools was
published in the Journal of Chronic Fatigue Syndrome, it hit the headlines
because it revealed that ME was the biggest cause of long-term sickness
[absence] in children and staff. On his TV show on the subject, Adam Boulton
described ME as 'attacking schoolchildren now'. Some children are bedridden
or in wheelchairs, others can't swallow and have to be fed by tube. Sounds
familiar? It should do. Yet the British scientists' lab work that
underpinned my work was generally dismissed. This - tragically - led to
misunderstandings and even to the mistreatment of children and young people
in the UK, which still persists today. We now require proper science about
the link between ME and polio, not the psychobabble we've had to put up wtih for the past ten years.
We must stand up for these genuinely sick children.
The reason no one believed ME was a persistent viral infection related to poliomyelitis is outlined at along with
news of the latest developments.

The Young ME Sufferers Trust, Stock, Essex

[Note: this letter was slightly edited for publication; in the original I
referred to myself as 'co-author' of the study in the Journal of CFS, since
Dr Betty Dowsett and I carried it out together. I have also inserted the
word 'absence' in square brackets; it was omiitted in the paper, which
changes the meaning.]
Jane Colby
Executive Director
The Young ME Sufferers Trust
PO Box 4347
Stock  Ingatestone
Essex  CM4 9TE
Tel 0845 003 9002


* * *

For those too debilitated to read the entire list of publications on the TymesTrust Magazine page (link above) the Autumn 2003 Tymes Magazine has the initial article on the ME-polio connection.

Dr. Richard Bruno observes "we're finding the same sorts of things in ME as in polio ... if it quacks like a duck and it walks like a duck ... what else could it be?  It's not possession by demonic forces."


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Working with CFS/Fibromyalgia

This year, the UN's focus is on "decent work for persons with disabilities".

People with CFS/fibromyalgia want to work, but often are not able to work under standard office conditions.  You may need to work lying down, or have instant access to a restroom (not one that's a hundred feet away or requires you to wait your turn), or need to take naps.  Or, as happened to me repeatedly, some symptom may become obvious during interviews, leading interviewers to question whether you can do the job as well as someone who doesn't have obvious symptoms, and, eventually, they choose to hire the healthy person instead.

Here are some legitimate work-at-home options for those of you who aren't inclined to become self-employed as I did. 

• Alpine Access: A call center company that uses home-based customer service representatives to handle calls for a variety of companies, including J. Crew and 1-800-Flowers.
• Arise: Matches work-from-home agents with open positions in sales, technical support and customer service.
• Convergys: Hires home-based agents to serve as customer service, technical assistance or sales agents for clients.
• Liveops: Customer service calls for a variety of major corporations are routed through this center and answered by people who work from home.
• Staffcentrix: Finds virtual assistants who perform a variety of administrative and other business tasks from their home for CEOs and other clients.
• VirtuServe: A call center that hires home agents for various services, such as telemarketing, help desk support and survey research.
• VIPdesk: Home-based concierge and customer service agents are hired to work with various companies.
• West Corporation: Finds customer service agents based out of their homes for a variety of industries, including pharmaceutical, retail and hospitality.
 Use search terms on job boards like "home office," "telecommute" and "work from home."


Get in touch with your State Department of Vocational Rehabilitation, and see whether they can be persuaded to buy you whatever equipment you need to work at home: a newer computer with whatever programs are required for employment, dictation equipment, fax, second phone line, high-speed internet, etc.

International Day of Disabled Persons

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The UN Chronicle The UN Chronicle
December 3, 2007 No. 15 The UN Chronicle
International Day of    Disabled Persons

In 1992, the UN General Assembly proclaimed 3 December as the International Day of Disabled Persons. The annual observance aims to increase awareness and understanding of disability as a social responsibility and to promote support for the dignity, rights and well-being of persons with disabilities.

There are an estimated 600 million disabled people worldwide — almost 10 per cent of the world’s population — 80 per cent of whom live in developing countries. In societies everywhere, most people with disabilities are likely to be unemployed, while others are either underemployed or will never have access to the labour market. This is often due to negative attitudes towards employing persons with disabilities. Thus, the notion that the disabled do not make good employees remains ever present.

The theme for this year’s commemoration, “decent work for persons with disabilities”, focuses on how to tap into the abilities of this marginalized talent pool. The Convention on the Rights of Persons with Disabilities, adopted in December 2006, advocates employment equality in an environment that is both accessible and accepting of persons with disabilities.

Below are related UN Chronicle articles on disability, as well as links to other relevant sites:

UN Chronicle, Issue 1, 2006

Education for Children With Special Needs - Difficult But Possible

By Uma Tulin

UN Chronicle, Issue 3, 2005

What the UN Can Do for the Disabled

By Adnan Al Aboudi

UN Chronicle, Issue 3, 2005

First Person: My Road to Purpose

By Kenneth E. Behring

UN Chronicle, Issue 2, 2005

Conversation with... Vivian Fernández de Torrijos

UN Chronicle, Issue 4, 2004

'Nothing About Us Without Us' Recognizing the Rights of People with Disabilities

UN Chronicle, Issue 4, 2004

'A World Enabled': Fighting for the Human Rights of Persons with Disabilities

By Victor Pineda

UN Resources and Related Links

Transcending Medical Limitations
By Roma Rana
UN Chronicle, Issue 1, 2003

These stories and more can be found online at The UN Chronicle is not an official record; the views expressed in individual articles do not necessarily imply official endorsement or acceptance by the United Nations. To subscribe to the print edition of the magazine, contact UN Publications at [email protected] or call (800) 253-9646, or go to for details on a special internet offer of US$10 per year. Please pass this UN Chronicle Email Alert on to anyone whom you think it might interest.

UN Resources and Related Links

United Nation Enable - UN DESA

World Programme of Action Concerning Disabled Persons

The Standard Rules on the Equalization of Opportunities for Persons with Disabilities

Themes and observance of the International Day of Disabled Persons

Draft Convention on the Rights of Persons with disabilities

World Health Organization (WHO)

United Nations Children's Fund (UNICEF)

The State of the World's Children 2006 - UNICEF

UN Women Watch