Friday, April 9, 2010

More News from One Click

  4. Canada Bans Blood Donations From People With Chronic Fatigue Syndrome (ME/CFS)
Canada has become the first country to ban people
with chronic-fatigue syndrome from donating blood

OTTAWA — Canada has become the first country to ban people with chronic-fatigue syndrome from donating blood. The precautionary move is a result of Health Canada's concern over a virus known as XMRV, which has been linked to chronic fatigue. XMRV closely resembles the AIDS virus, prompting fears it can be similarly transmitted through blood transfusions. The virus has also been linked to prostate cancer. Dr Dana Devine, the vice-president of medical and research affairs for Canadian Blood Services, said she expects the new guidelines to take effect by the end of the month.
Canwest News Service, The Gazette
Related Links:
XMRV Virus Testing Available From WPI For UK ME/CFS Patients
Information Release, UK XMRV Virus Study
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
Judy A. Mikovits et al, 10.1126/science.1179052, Science Express

Debunking Myth Of Lazy ME/CFS Sufferers

A recent survey by the TUC discovered that one in five public workers turned up for work during the past month – one of the coldest winters for 30 years – in spite of being poorly. Another report of the findings of an earlier survey, using a wider cross section of UK workers showed that 95 per cent have admitted to struggling into work when ill. It seems that people are not as work-shy, and do not take as many "sickies", as is often suggested. Why is it, then, that the very first assumption made about people with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is that they are lazy and do not want to work, when that runs contrary to the national trend and when they previously had a good attendance record at work or school? These studies should help dispel this myth once and for all, and have doctors focusing on the organic cause of this disabling neurological illness, which keeps so many people who are willing but not able hidden from view and cut off from being as active in society as they long to be again.
Dr John H. Greensmith, Southern Reporter


Thursday, April 8, 2010

Social Security disability cases time lag: Ohio is worst

The worst states to live in if you're an SSDI applicant?
  1. Ohio, 590.8 days
  2. Michigan, 575.7
  3. Minnesota, 566.0
  4. Wisconsin, 562.6
  5. Indiana, 537.4
Overall, one out of every 25 Americans is collecting Social Security Disability Insurance. The average monthly total per person is $1,064.
* * *
In other words, the average payment is less than minimum wage.  It's readily acknowledged that it's impossible to live on minimum wage, so don't think SSDI recipients are living a luxurious life on your tax dollars.

UV light helps MS sufferers

how UV light helps MS sufferers:

* * *
A reminder that I'll occasionally toss some MS info in here because of the similarities in symptoms between the two.  They're close enough that some CFS patients have been labelled as "atypical MS".
I was diagnosed with CFS about the same time someone else at church was diagnosed with MS.  She got sympathy, pity and all the help she needed; I got verbal abuse for not helping to do her housework when I was barely managing my own.  I asked my doctor why she got a different diagnosis on essentially the same symptoms and his explanation was that she had double vision (which appears in MS but not in CFS) while I had some symptom that appears in CFS but not in MS.
So, I see no reason why I can't occasionally share something here that helps MS, which may or may not help those with CFS as well.

Wednesday, April 7, 2010

United Nations Declaration on Rights of the Disabled


"Persons with disabilities have the right …

to respect for their human dignity …

[to] the same fundamental rights as their fellow-citizens …
[to] the same civil and political rights as other human beings …
[to] measures designed to enable them to become as self-reliant as possible …

to medical, psychological and functional treatment [and]
to develop their capabilities and skills to the maximum [and]
hasten the processes of their social integration or reintegration …

to economic and social security and to a decent level of living …

according to their capabilities, to secure and retain employment
or to engage in a useful, productive and remunerative occupation
and to join trade unions [and] to have their special needs taken into
consideration at all stages of economic and social planning …

to live with their families or with foster parents and to participate in all
social, creative or recreational activities [and not to] be subjected, as far
as his or her residence is concerned, to differential treatment other than
that required by his or her condition …

[to] be protected against all exploitation, all regulations and all
treatment of a discriminatory, abusive or degrading nature …

[and] to avail themselves of qualified legal aid when such aid proves
indispensable for the protection of their persons and property …"

from the Declaration on the Rights of Disabled Persons, proclaimed by the UN General Assembly on 9 December 1975

Some 10 per cent of the world's population, approximately 650 million people, live with a disability.  They are the world's largest minority, and some 80 per cent of them live in developing countries.  Among the worlds poorest people, 20 per cent have some kind of disability.  Women and girls with disabilities are particularly vulnerable to abuse.  Persons with disabilities are more likely to be victims of violence or rape, and are less likely to obtain police intervention, legal protection or preventive care. Some 30 per cent of street youths have some kind of disability, and in developing countries, 90 per cent of children with disabilities do not attend school.

In the developed world, a 2004 United States survey found that only 35 per cent of working-age persons with disabilities are in fact working — compared to 78 per cent of those without disabilities.  In a 2003 study by Rutgers University, one third of employers surveyed said persons with disabilities cannot effectively perform the required job tasks.  The second most common reason given for not hiring persons with disabilities was the fear of costly special facilities.

The needs and rights of persons with disabilities have been high on the United Nations agenda for at least three decades.  Most recently, after years of effort, the United Nations Convention on the Rights of Persons with Disabilities and its Optional Protocol was adopted in 2006 and entered into effect on 3 May 2008.

 "UN Enable", which gives voice to the United Nations commitment to uphold the rights and dignity of persons with disabilities, describes the Convention as marking a paradigm shift.  It takes to a new height the movement away from viewing persons with disabilities as objects of charity, medical treatment and social protection, towards viewing them as subjects having rights.  And as such, they are capable of claiming those rights and making decisions for their lives based on their free and informed consent, as well as of being active members of society.

The Convention, according to UN Enable, is a human rights instrument with an explicit, social development dimension.  It reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms — and it clarifies exactly how those categories of rights must be applied.  Moreover, it specifically identifies areas where adaptations have to be made to enable persons with disabilities to effectively exercise their rights, as well as areas where their rights have been violated and where protection of their rights must be reinforced.

In a statement welcoming the Convention's entry into force, Secretary-General Ban Ki-moon has called for a concerted effort to translate its vision into reality, to address "the glaring inequalities experienced by persons with disabilities".  The UN is continuing its efforts to that end.

The UN International Day of Persons with Disabilities is observed every year on 3 December.

* * *

Nonetheless, patients with ME/CFS continue to be denied appropriate medical care by those who refuse to acknowledge a biomedical cause for the illness, and all disabled people in the US are expected to survive on a monthly check less than minimum wage, in violation of the requirement of "a decent standard of living".

Yes, there are subsidized housing units, but in my city, the waiting list is 10 years long.  Meanwhile, we have disabled people who have no living relatives paying virtually their entire monthly income for rent, leaving almost nothing for food and utilities and medical care, or opting for food and medical care and becoming homeless.

It is time for CFS patients to revolt.  Letters of complaint to the UN are in order.

Canada Prohibits ME/CFS Patients from Donating Blood

 2. XMRV Virus - Canada Prohibits ME/CFS Patients From Donating Blood

An AIDS-like virus, XMRV, that has been linked to chronic fatigue syndrome is causing Canadian blood officials to ban anyone who has suffered from the ailment from making donations. Canada is the first country in the world to make the move, which is being rolled out in donation centres nationwide over the coming weeks, says Dana Devine, head of medical and scientific research with the blood services agency. A study published last October in the prestigious journal Science suggested that XMRV was strongly associated with chronic fatigue. Lead study author Judy Mikovits said the virus had almost certainly entered the U.S. blood supply system, but did not know whether it would be susceptible to the same heat treatments that successfully kill off the AIDS virus in blood products. An estimated 340,000 Canadians are diagnosed with chronic fatigue syndrome (ME/CFS).
Joseph Hall, Torstar News Service, Hamilton Spectator
Related Links:
XMRV Virus - Threat To Blood Supply Probed
Amy Dockser Marcus, The Wall Street Journal
XMRV Virus Testing Available From WPI For UK ME/CFS Patients
Information Release, UK XMRV Virus Study
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
Judy A. Mikovits et al, 10.1126/science.1179052, Science Express

* * *
I was a regular blood donor before I got sick.  In 1988, the virologist told me to stop donating.  When I passed this information along to the blood bank, at least a dozen volunteers reassured me that the only virus they tested for was AIDS, so if I didn't have that, I could donate.  So what if my virologist told me someone could get sick from my blood?  What did he know?  They needed blood and mine was a valuable type.
"Could" is not the same as "should", and I didn't want it on my conscience that I'd given someone else this horrible illness, so regardless that the blood bank's questionnaire wasn't going to screen me out, I stopped donating, no matter how big a guilt trip the blood bank laid on me.  Hmmm, someone dies without my blood or someone dies because of my blood?  All winds up looking pretty much the same.
I repeatedly asked to be taken off the list, and a month or so later I would nonetheless get another call begging me to come in and donate.
After several years of phone calls and refusals, I finally got off the blood bank list by moving to another county.
Sooooooo, if you need a blood transfusion, Be Afraid.  Be Very Afraid.  The US has probably guilted quite a few of my fellow patients into donating over the past quarter-century, and apparently still are not screening us out. 

Tuesday, April 6, 2010

We're not the only ones who have trouble getting Disability benefits!


ME/CFS Centre for Social Support now open in Second Life

****ME/CFS Centre for Social Support now open in Second Life****

Dr. Kirsty Best from Murdoch University has set up a Centre dedicated 
to people with ME/CFS in the virtual world Second Life.

We invite all those with ME/CFS and their friends and family to use 
the Centre and attend our gatherings and events. We hold regular 
meetings in the Centre, where people with ME/CFS gather to find 
support, friendship and information. We also host visiting speakers, 
guided relaxation/meditation, and more. All you need to attend is a 
Second Life account, available for free. We suggest those with ME/CFS 
sign up through Virtual Ability:

Once you have an account and have downloaded Second Life, the Centre 
can be accessed through this URL: http://www.tinyurl/me-cfs  All you 
need to do is open up the Second LIfe application on your computer, 
open up the URL in your web browser (http://www.tinyurl/me-cfs ), and 
then click "Teleport now" above the image of the Centre.

You may want to visit our website ( even if 
you choose not to enter Second Life. We publish recordings of our 
visiting speakers, information about ME/CFS, and a calendar of events 
taking place in the Centre. Please feel free to join our mailing list 
to get updates on events and to read or contribute to discussions 
about ME/CFS (

**More information**

- To find out more, our website is:

- Join our mailing list at: 
(You need to create a Google account if you don't have one, or sign in 
with the account you currently have).

- We have just started an ME/CFS lobbying/advocacy collaborative wiki 

- Take a virtual tour of the Centre here:

- Join the ME/CFS Centre group in Second Life (do a search for ME/CFS 
Centre once you are logged in and click Join. It's free)

The director of the Centre is Dr. Kirsty Best of Murdoch University. 
Kirsty's avatar name is Kirsty Bearsfoot. Please contact or email her 
with any questions.


. XMRV Virus - Threat To Blood Supply Probed

An infectious virus linked to two diseases, prostate cancer and chronic fatigue syndrome, is drawing the attention of public-health officials, who are investigating the potential threat to the nation's blood supply. Efforts are under way to find effective tests for the virus and determine its prevalence, led by a working group funded by the National Institutes of Health and including federal agencies such as the FDA and the Centers for Disease Control and Prevention. Blood banks, academic institutions and at least one advocacy group are also involved. The working group was established after a paper was published in October in the journal Science, where researchers reported finding the virus in a majority of 101 patients with chronic fatigue syndrome. The study's co-authors at the Whittemore Peterson Institute for Neuro-Immune Disease, the National Cancer Institute and the Cleveland Clinic, also found the virus in nearly 4% of 218 healthy people used as c ontrols in the study.
Amy Dockser Marcus, The Wall Street Journal
Related Links:
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
Judy A. Mikovits et al, 10.1126/science.1179052, Science Express

XMRV Virus Testing Available From WPI For UK ME/CFS Patients

This is a temporary site created for the purpose of facilitating communication between the Whittemore Peterson Institute USA and the UK study participants. UK study: We are scheduling London first. Those draws should take place as early as next week. More than 225 people emailed almost half home bound. We are planning now how to most efficiently draw the homebound. No one will be excluded from the study. Everyone will get individual results and the testing takes approximately 3 weeks.
Information Release, Whittemore Peterson Institute
Related Links:
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
Judy A. Mikovits et al, 10.1126/science.1179052, Science Express