Thursday, July 5, 2012


For the full experience, join our Facebook and YahooGroups, too.  Not all the same things get posted to all three places.

What Those with Chronic Pain or Illness DO Want to Hear You Say

Yes, PLEASE, offer to run errands for me while you're doing your own!
Saying these things on my own has gotten me called "whiny" or "greedy" or "attention seeking" -- if people won't listen when you say them, give them this ... maybe they'll listen when Toni says it!

Wednesday, July 4, 2012

As I See It -- Kenneth J. Friedman

Note: If research is never read and/or cited it may as well not exist.

Kenneth J. Friedman
As I See It

Quietly, and without much – if any – concern, the Journal of Chronic
Fatigue Syndrome ceased publication in 2008. This ended the
publication of the only journal dedicated to the promulgation of
research on Chronic Fatigue Syndrome, now termed ME/CFS or Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome.

Prior to the demise of the Journal, CFS research was already in
trouble. The illness had been doubted by many in the medical
profession, given its highly variable symptomology, lack of a
definitive, diagnostic test, and the reliance on patients' reports of
feeling ill. As a result, the credibility of the illness as a valid,
pathological entity has always been questioned. These uncertainties
have had negative consequences: Research funding for the illness has
faltered, the number of researchers performing ME/CFS research has
been comparatively small, reviewers capable of reviewing ME/CFS
research papers for publication have been few in number. Consequently,
comparatively little has been published on ME/CFS. Currently, only a
few journals are willing to accept such papers.
Hence, the importance
and significance of the demise of the Journal of Chronic Fatigue

The Journal of Chronic Fatigue Syndrome, as important and as needed as
it was to the ME/CFS community, succumbed to a faulty business plan.
Originally published by the Haworth Press, it faltered and was
purchased by Taylor and Francis. Taylor and Francis, despite being a
larger, better known, medical publisher, eventually folded the
journal. Ultimately, the journal failed for economic reasons: It was a
journal dedicated to a doubted illness - although the illness affects
an estimated one million people in the United States. The journal did
not have a sufficient subscription base. The journal never achieved
sufficient recognition so as to have its contents catalogued in the
all-important (U.S.) National Library of Medicine Medline indexing
service. That meant the articles appearing in the Journal of Chronic
Fatigue Syndrome were not retrievable via PubMed, nor were abstracts
of the articles retrievable online. The only way to access the Journal
and any article contained therein was to visit one of the few
libraries that had subscribed to the publication.

To provide a home for the publication of ME/CFS research, the IACFS/ME
sought to establish a new journal. Such a journal must have an
editorial board capable of evaluating research papers in the area of
ME/CFS. But such a journal has been attempted before - and failed.
Consequently, the key to success of the IACFS/ME journal must lie in
avoiding a failed business plan. For the dual reasons of economic
viability and increasing cross-disciplinary interest in ME/CFS, the
scope of the journal must be broad enough to permit other, relevant
research papers to be published therein. By so doing, sufficient
interest in the journal will be maintained, journal subscriptions will
come from a larger audience, and the economic viability of the journal
will thereby be assured.

By encouraging a wider, more diverse, multidisciplinary readership,
and developing a larger economic base, the IACFS/ME hopes to see its
new journal indexed in Medline at the conclusion of its trial period.
Indexing in Medline should increase interest in ME/CFS as well as
afford the ME/CFS literature a wider readership. Increased readership
also has the potential to generate greater recognition of ME/CFS, and
to generate new research ideas relevant to ME/CFS - something that we
need. A ME/CFS journal has never before achieved Medline indexing
status. This will be a significant event for ME/CFS research.

When thinking about the IACFS/ME's new journal, Fatigue: Biomedicine,
Health and Behavior, please take into consideration the rationale
presented above.

Obamacare's effect on number of uninsured

Mitt Romney made the claim that "Obamacare … means that for up to 20 million Americans, they will lose the insurance they currently have" .... PolitiFact rated Romney's claim "false." ... CBO also found that "perhaps 3 million [Americans] could gain employer coverage."  ... the CBO estimates that about 3 million people will drop their employer-based coverage because they can get a better deal through the health insurance exchanges set up under the Affordable Care Act. These Americans will not lose coverage; they will choose different coverage that better suits their needs. For these people, the Affordable Care Act is a very good thing. PolitiFact says that Romney (ergo, Brooks)… ignores 9 million people who wouldn't have had an employer plan before the Obama law, but who will get employer coverage after passage of the law….
CBO projects that, overall, the number of uninsured Americans will drop by 29 million to 31 million due to the law.

Monday, July 2, 2012

Sunday, July 1, 2012

The 'Busy' Trap -

"I write in the morning, go for a long bike ride and run errands in the afternoon, and in the evening I see friends, read or watch a movie. This, it seems to me, is a sane and pleasant pace for a day."
* * *
This is one of the benefits of CFS -- it forced me to get off the hamster wheel.  I now have no choice but to stop and smell the roses, because I frequently need to rest.  I can see the craziness of those who insist that they are too busy to do anything except run around in small circles.