Friday, September 30, 2011

The mystery of chronic fatigue syndrome -

by Jay Levy & Dan Peterson
For more than 100 years, medical literature has contained reports of a debilitating illness that causes prolonged fatigue, memory loss, headaches, cognitive problems and issues with digestion and sleep. Teddy Roosevelt, John Muir and Thomas Eakins all suffered from what was then known as neurasthenia.

At that time, the recommended treatment for women was bed rest; men were advised to head to the Wild West. But neither treatment could be counted on to cure the disease.

Thursday, September 29, 2011

Decoding the God Complex -


"Medical schools are starting to train doctors to be less intimidating to patients. And patients are starting to train themselves to be less intimidated by doctors."

* * *

Maybe when doctors stop thinking they're God, they'll be more willing to listen to patients so they get the RIGHT answers.......

Wednesday, September 28, 2011

Dr.Oz on Pain (Video)

The Challenges of Living with Invisible Pain or Illness

Required Reading from Toni Bernhard -- for you and your caregiver

Online learning

One of the big complaints I hear from PWCs is that being home on the couch all the time is boring.  Use your downtime to learn something!  Some of these are free.
i Tunes U  --

Tuesday, September 27, 2011

Research &Conferences

September 13, 2011


A high-profile study of a promising new approach to treating leukemia
reminded many of us of a similar study of CFS from 10 years ago. Read
more at

XMRV and its reported association with CFS has been the subject of 17
published studies, 15 of which have not found evidence of a link. "The X
Factor," to be published in the summer-fall issue of SolveCFS (now at
press), summarizes the two-year effort to square conflicting data. Read
more at

Two important publications about XMRV were issued in early September. A
special issue of Advances in Virology and a technical assessment from
the European Centre for Disease Control add to the growing literature
about XMRV.

Three years after infection with Giardia lamblia, a common intestinal
parasite, 46.1% of a large study population in Norway reported
persistent chronic fatigue. Although it's not possible from this study
to assess how many met CFS criteria, this study adds data on triggers of
post-infectious illness.

Benjamin Natelson, MD, describes his team's next steps to follow up
exciting results from a spinal fluid marker study published early this
year in, "CFS: Is It All In the Brain?" Read more at

Alan Light, PhD, Charles Vierck, PhD, and Kathleen Light, PhD, have
authored a book chapter titled, "Translation from Mouse Sensory Neurons
to Fibromyalgia and CFS" in the text, "Translational Pain Medicine: From
Mouse to Man."

The National Institute of Health has posted its report of the ME/CFS
State of the Knowledge Workshop held April 7-8, 2011. Read more at

Research news is regularly updated on our Research1st website. Listings
and descriptions of recent journal highlights
(, current
research initiatives (
and media coverage
complement blog posts that address a variety of topics. Subscribe to
email alerts
about new posts to the site.

Our scientific director, Suzanne D. Vernon, PhD, was in Stockholm last
month for a symposium for the Ministry of Health with other CFS experts.
Her presentation and media coverage are recapped in "Today in
Stockholm."

The coding used by insurers and other institutions to track CFS-related
claims will be addressed by the ICD-9-CM Coordination and Maintenance
Committee on Sept. 14 at a meeting in Baltimore. Read more (from the
Coalition 4 ME/CFS) at

The CFIDS Association nominated four highly qualified individuals to
serve on the federal CFS Advisory Committee.

Dr. Vivian Pinn, who directed the National Institute of Health's Office
of Research on Women's Health (ORWH) for two decades, retired last
month. CFS research at the NIH is coordinated through the ORWH. A
national search is being conducted for a successor. Read more at

Lucinda Bateman, MD, addresses the huge information gap that separates
people with ME/CFS from their primary care and specialty providers. Read
more at

Through a new collaboration with patientINFORM, the CFIDS Association
will be able to share links to full-text versions of many medical
articles with readers.

National Public Radio covered CFS in two Labor Day reports, with mixed
results. Joanne Silberner ( reported on current
research and the experience of CFS, while Patti Neighmond
( focused on the controversial PACE study of
behavioral therapies. HealthNewsReview ( gave
Neighmond's story 3 stars out of 10.

The IACFS/ME will host the 10th International CFS/ME Research and
Clinical Conference in Ottawa, Canada, Sept. 22-25, 2011. The conference
theme is "Translating Evidence Into Practice." (

BioMed Central and Retrovirology's second biennial "Frontiers of
Retrovirology" ( conference
will be held in Amsterdam, Oct. 3-5, 2011.

The documentary, "Voices from the Shadows," (
portraying the stark reality of young people affected by ME/CFS, will be
shown on Oct. 8 ( at the
Mill Valley Film Festival, held Oct. 6-16. A full schedule of films and
related events is posted here

The Texas A&M Health Science Center will present a symposium,
"Post-Infectious Syndromes Affecting the Nervous System,"
on Oct. 13-14, 2011.

The NJ CFS Association's fall conference "New Horizons in Public Health,
Treatment & Diagnostics in CFS,"
df) will be held Oct. 16, 2011 in Eatontown, NJ.

Laura Hillenbrand's "Unbroken" is a finalist for the prestigious 2011
Dayton Literary Peace Price. Congratulations, Laura!

The summer-fall 2011 issue of our print publication, SolveCFS: The
Chronicle of the CFIDS Association of America, is at press and will be
mailed to donors and supporters next week. To receive a complimentary
copy, please send your name and mailing address to with
"SOLVECFS" in the subject line.

The CFIDS Association of America
working to make CFS widely understood, diagnosable, curable and

Help Us Get a Google Doodle for May 12th

Help Us Get a Google Doodle for May 12th

We have started to work on a campaign to ask Google if they will create a
Doodle for May 12th 2012 which is the 20th anniversary of International
Awareness Day.

A Doodle is the artwork you see on the Google search page. For examples,
please see

So far we've set up a new page in Facebook called "Google please create a
Doodle for May 12, 2012" . If you use
Facebook, please "LIKE" the page to show your support.

If you don't use Facebook, an awareness petition is available to sign at

We also ask that each person send a separate request to
<>  asking for a Doodle.
Please copy in  <> so we can track
the number of emails sent. 

Also please spread the word of this as far and as wide as possible. We need
support from people around the world.

Any questions please contact

Thanks in advance for your support.

Highlights of Quest #88


Quarterly newsletter 

Summer 2011 – No. 88




An in-depth look at the figures & findings of the 2010 Canadian Community Health Survey;


Issue No. 3

Summer 2011

The Journey


·      Vagus Nerve Stimulation shows promise for treatment-resistant fibromyalgia;

·      Independent Medical Examinations (IMEs) and You;

·      New research points to benefits of multidisciplinary treatment;

·      Ten observations about recovery from CFS;

·      Website Profiles;

·      Support Group News & Updates

·      Bee stings to reduce fibromyalgia pain?


, with the added section of The Journey,  is the quarterly newsletter of the National ME/FM Action Network and free with a membership of $30.00 per year,

Lydia E.  Neilson, M.S.M. , Founder
Chief Executive Officer
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518


SEPTEMBER 22 - 25, 2011

For details on agendas and registration, please visit:  

Member of

Dr. Oz on Chronic Pain (or Chronic Pain on Dr. Oz)

 Dr. Oz on Chronic Pain (or Chronic Pain on Dr. Oz)
116 million of us have chronic pain, and doctors have not been taking pain seriously enough – but it's real
patients use words like "frustrating", "feel invisible", "dismissed"
one who was told she was just depressed said "it made me feel belittled" – Oz notes the doctor did not have an answer, so he turned the guilt back on her
our dear Dr. Donnica Moore herself has chronic pain and notes it affects every aspect of your life – work, mobility, child care...  And that chronic pain leads to depression
Dr. Sean Mackey published a study on pain (can someone google this up, please?)
Dr. Julie Silver is a pain management specialist
Oz notes that doctors DO think you're crazy, it's all in your head.
#1 – they can't see your pain
      But it causes fundamental changes in your nervous system
     We now know pain is the concept of disease
#2 – most doctors have no pain management training
#3 – they tend to automatically assume drug-seeking behavior
      Mackey notes there is a huge problem with black-and-white thinking – either you are a druggie or doctors hand them out like candy because they don't know how to properly prescribe them
#4 – you're a woman
      even Dr. Donnica was denied proper treatment until she saw a female doctor
Mackey quotes "Pain is what the patient says it is"
the brain becomes trained to feel pain and when the stimulus is removed, the brain still reacts as it's been trained
Dr. Donnica says we need to change doctors' perspective, get the word out about this being real
4 questions to find a doctor to treat your chronic pain:
#1 – how much pain management training have you had?
       It may be only a few hours in medical school.  We don't have enough pain management specialists to go around to the 116M patients who need them
#2 – what is your approach?
      (surgery, pills, exercise, nothing)
#3 – how long until I see results?
#4 – how much will it cost?

Check out Insider Looking Out: How People With Chronic Fatigue Syndrome View

Scholarship for Students with Disabilities

Google recently announced the Google Europe Scholarship for Students with Disabilities. This scholarship is designed to give students living with disabilities improved access to computers and other technologies, and to nurture the growth of future innovators. Each recipient of the scholarship will receive
€ 7,000 for the 2011/2012 academic year.

Monday, September 26, 2011

Medical Professionals With CFS

      About Medical Professionals/Persons With CFIDS

MPWC was formed in 1993 by Gail Dahlen and Meghan Shannon to give MPWC's
an opportunity to coordinate their efforts, support each other, and make
a difference for all PWC's.
MPWC keeps an updated and completely confidential registry of medical
persons with CFIDS. This group includes nurses, MD's, medical
technologists, physical therapists, respiratory therapists, pharmacists,
psychologists, medical office personnel, and any other person who was in
any way associated with a medical profession. Just as with other PWC's,
some MPWC's are still able to work, some are able to work only
part-time, and some are totally disabled. We are the only group who has
kept ongoing information on medical persons with CFIDS. MPWC has also
conducted surveys on the name since 1993.
MPWC participates in a variety of advocacy and awareness activities. We
are now the official representative of BRAME in the US. We have joined
over 20 other countries,joining BRAME (Blue Ribbon for Awareness of
M.E.) around the world, and are in contact with many other persons,
researchers and medical as well as non-medical persons world-wide.
We have successfully approached several medical magazines such as
Advance/Laboratory and MT Today to do stories about CFIDS, specifically
about CFIDS in the medical professions. We feel that it is extremely
important that others who work in medical fields are aware of the
inordinate number of MPWC's and the significant number of CFIDS
"clusters" in medical settings such as hospitals, medical laboratories,
and physician's offices.
If you are a medical professional interested in joining MPWC, write to
the webmaster <> for further information. We
have a lot of good and GREAT plans, ideas and projects in the
future.....and are in the process of applying for non-profit status will want to be a part of these plans!!

What Are Autoimmune Diseases?

Beware of trolls



This is a longer, unedited, version of a contribution that I have
submitted to the "Comment is free" section of the Guardian, today, (26
September 2011).

Whether they choose to publish it, I intend to make this the basis of a
continuous campaign, circulating editors of all media where I find
examples, with a version of this, as an open letter or a press release.

I welcome any constructive positive comments, additions and help with
editing for length and presentation. I hope that as many of you as can
manage such help will join in - if you have any help to offer please
e-mail me - or this nasty practice will go on keeping you ill.


Some people may not have known the meaning of the word, nor what any
kind of Troll is like; some may have only known about the dark
unpleasant folklore characters of Norse Mythology and their unpleasant
deeds, until Sean Duffy was imprisoned for being a one of the Internet
generation of Trolls (Internet troll jailed after mocking deaths of
teenagers, Guardian, 13 September 2011 -

Any human, still in the dark, should know that an Internet Troll is one,
"who posts inflammatory, extraneous, or off-topic messages in an online
community, such as an online discussion forum, chat room, or blog, with
the primary intent of provoking readers into an emotional response, or
of otherwise disrupting normal on-topic discussion." (Wikipedia - There is further
enlightenment in Martin Belam's, "All you trolls out there – come out
and explain yourself" (Guardian, Comment is free, 13 September 2011 -

So, now we know what they do, who are they and why do they do it?

It seems that there may be different types of Troll with various motives
or ambitions and each may have different explanations.

Unless you ask them and they give you a truthful answer, there is a
certain amount of deduction based on the evidence of their behaviour.

They all have in common that they conceal their true identity behind an
alias or nickname working in, preferring the dark at the fairy tale
trolls do and, likewise, not wanting any light shone upon them. Some, we
suspect, or actually prove, take more than one false name to add another
layer to their intrigue, or to give the impression that the number of
Trolls is actually greater, as though more of them gives a greater
rectitude to what they do.

We can identify the lone Troll, or one who appears to have no
associates, who seems to make a career of it, using the same nom de
plume in different newspapers and different topics. What can the motive
be? simply something to do, they may be unemployed; a sense of defiance
of the law or customs and getting away with it, power over the
authorities for once, since this may be otherwise a very power-less
person. may use the same name to gain notoriety and a reputation for
being elusive - in old days "The Scarlet Pimpernel" masked people The
Lone Ranger, Batman or modern the graffiti artist "Banksy". There seems
to be no other gain but unlike some of the heroes just mentioned there
is a cost to some particular members of society or society as a whole in
sheer vandalism for no personal gain.

More often there does seem to be a motive and some gain for Trolls and
they may not be working alone, either without any formal dialogue or
agreement amongst themselves but just from realising there is a mutual
benefit by acting in a co-ordinated way, or there may be a deliberately
planned orchestrated effort.

My personal interest is as a Research Psychologist, diagnosed with M.E.
(Myalgic Encephalomyelitis) in 1988, 23 years ago at the time of
writing, who also tries to represent other people with M.E.

The elements that I have identified are far from modern, restricted only
to M.E., to any one particular medium, or for only one purpose. I hope,
however, by using my experience and those of fellow sufferers to
illustrate a practice that is ubiquitous, much more common and harmful
than may be appreciated both to individuals and society and, largely,
remains hidden due to a combination of stealthy Troll practices and
inertia on the part of those who could help to prevent it but, in
failing to do so, probably quite unwittingly conspire with Trolls to
keep it all going.

The goal for Trolls, either working alone and/or in concert on comment threads after news items about M.E. is to have the discussion closed down. Why would they do this? Leaving aside the lone Troll, who may get some sadistic pleasure from anonymously abusing an already weaker vulnerable person than they themselves may be, the main reason is that they simply wish to have no opposition to their own views and there is a strong motive for this: they make a career out of holding it, whether rewarded with money or prestige, which would be threatened if it were

There are several ways of working towards this goal. The most patent
tactic underlying all postings is to persistently make provocative
comments, whether from the same or a different person. Some genuine M.E.
sufferers take the bait, which helps them. Supported by fellow Trolls,
usually to an agreed plan, to preserve their careers. It can also derail
the discussion and shift it to make the Troll now appear the victim of
an attack. This may continue until the moderators receive so many
complaints, some of which may be genuine ones about abusive postings but
some which have come from Trolls about fellow trolls to deliberately
inflate the number, that the shut the comments down, rather than to
smell any kind of rat, look into the reasons for this behaviour and
identify the trouble makers.

Some may be acting to protect a particular business interest. For
example, if, after a relatively favourable news item about a particular
treatment for M.E. there are many postings that are justifiably critical
of it on scientific grounds or there are poor personal experiences,
practitioners and advocates may mount an orchestrated effort to have the
comments closed on the grounds of abusive postings, in order to remove
all arguments, including the unfavourable ones, to leave the impression
that there is no opposition to the article at all. This is not even
selective editing but censorship.

Some seem to have a personal promotion, for example a book or, again, a
kind of therapy. If M.E. suffers post opinions that this particular book
is not about M.E. at all or this kind of therapy has no proof of
efficacy at all, the original promoter will often return with additional
promotional material, distracting from the main thread. After a while,
this may deter genuine posting, to prevent flagrant advertising
continuing and this has the same effect of reducing and distorting
representation as if the the comments had just been closed down. (At
least examples of this behaviour can be seen because they remain open
but abandoned by M.E. sufferers, whereas the other variety, closed by
moderators, leaves no trace).

These Trolls must be pretty desperate or twisted to want to get their
own way, knowing that people are likely to suffer, remaining ill for
decades because of their selfishness.

Those who organise online comments for newspapers must know that this
goes on, or at least that there are some topics more likely to encourage
provocative Trolls than others because some do not have a facility for
comments at all, whereas others are at least given a start. Unwittingly,
therefore, they may be conspiring with, or playing right into the hands
of the Trolls.

It is not a new practice at all. Synonyms for Trolls and their behaviour
can be found in different periods of history - Trojan Horse; for ruses,
wolf in sheep's clothing, maybe episodes of lobbing grenades to counter
campaigning movements which, nevertheless, won through.

The question is whether - as in love or war - it is fair game? That they
continue to get away with it because they can? Or do we seek to stop it
and, if so, who takes the responsibility and who imposes any sanctions?

It is a moot point (surely exploited by Trolls) whether any one
authority is responsible, since it occurs in different media or perhaps
it falls between several stools of responsibility or beyond the scope
of, say, the Press Complaints Commission or any Internet Service
Provider and, therefore, nothing gets done.

It is arguable that, even if there were a nationally, or universally,
accepted authority for regulation of the Internet, any gains by rules
imposed if one private individual or corporation were to take control of
the Internet, would be worth the loss of freedom of expression it
currently has.

I suggest that communally agreed self-regulation would be the best
solution. A set of criteria by which illegitimacy of postings could be
judged, such as any selfish gain for the contributor, orchestrated
posting etc., might be established and built upon. Editors of national
and provincial newspapers should set an example by permitting comments
after all published items and leaving unacceptable postings as bad
examples of why the Trolls have been barred from future discussions.
This preserves the quality of debate and does not punish all for the bad
behaviour of a minority. Above all it protects the freedom of the press
by stopping blanket censorship.

If there is any concern about resources, I am sure there would be a
willing pool of alert pre-moderators watching to assist the newspapers'
moderators in addressing, if not bringing to an end, this dark practice.

Something does need to be done to counter these people who really are
contributing to keep us all ill, while they promote their own careers.

I shall be sending this, or a similar version, as an open letter or
press release to Editors, inviting them to take part in this voluntary

Best wishes
Dr John H Greensmith
ME Community

Sunday, September 25, 2011

Website for College Students with Disabilities

I would like to share with you the link to the We Connect Now website. The website was created while I was
a college student with a grant I received from YP4 to develop a
website to serve college students with disabilities. The website was
developed in an effort to connect and integrate college students with
disabilities as a virtual community with a voice on important issues.
The We Connect Now website has been up and serving college students
with disabilities since April of 2008.

I wanted to share the We Connect Now website with you so that you may
post it as a resource in your website or otherwise share it with
students that you serve or have contact with. The website has been
used as a resource by institutions of higher learning and has been
linked to by colleges and universities and groups serving people with
disabilities in 50 states and at least 9 foreign countries.

I thank you for any and all help that you and your office may give me
in promoting this project as a service to all college students with


Gabriela McCall Delgado