lotusinthemud

'but you don't look sick' - people with me/cfs fight the 'lazy' label

....“The first thing I had to give up was my work,” Deering said. “I just kept thinking, any day now, I’ll feel better. It took me years to learn that wasn’t going to happen.”

Chronic fatigue syndrome, also known as chronic fatigue and immune dysfunction syndrome, is a complex, mysterious and widely misunderstood illness. Characterized by profound fatigue that is not improved with bed rest, the condition also results in a myriad of other debilitating symptoms.

Nancy Gordon, another local sufferer of CFS, was a licensed clinical social worker in a private practice before a car accident in 1992 changed her life. Gordon was diagnosed with fibromyalgia in 1995, and as she became more paralyzed with pain, fatigue and a loss of cognizance, she finally began to rely on disability in 1998. She was diagnosed with CFS in 2000....

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::read more here

m.e./c.f.s - research breakthough: link with retrovirus xmrv

Xenotropic Murine Leukemia virus related Virus (XMRV)

Research Breakthrough News

8th October 2009

WHITTEMORE-PETERSON INSTITUTE PRESS RELEASE (.pdf document)

This evening and around the world, news and scientific web sites are publishing details of a groundbreaking scientific research study that for the first time links a normally dormant retrovirus called XMRV to patients with a diagnosis of Chronic Fatigue Syndrome or Myalgic Encephalomyelitis. This virus is also related to a subset of patients with Prostate Cancer. You can read an overview of XMRV in relation to Chronic Fatigue Syndrome and Myalgic Encephalomyelitis here.

According to the study which was published in the respected Journal "Science", over 67% of those with CFS tested positive for the XMRV virus compared to only 3.7% of health controls.

chronic fatigue syndrome (m.e.) disability scale

Chronic Fatigue Syndrome Disability Scale

  This is an adaptation of the National Health Service Disability Scale, of which is used throughout the medical profession.

You may have seen this scale ‘the other way around’ with 0% referring to severe symptoms, and 100% as fit and well. However this scale is shown in Living with M.E.: The Chronic, Post-viral Fatigue Syndrome By Dr. Charles Shepherd ISBN: 0091816793.

O% - FIT AND WELL FOR AT LEAST THE PAST THREE MONTHS.

No symptoms at rest or following activity. Capable of full-time employment.

10% - GENERALLY WELL.

No symptoms at rest. Occasionally mild symptoms may follow activity. Capable of most forms of full-time employment.

20% - OCCASIONAL MILD SYMPTOMS AT REST.

More noticeable symptoms following activity. Some restriction of capabilities which require physical exertion. Able to work full-time but difficulty with work that requires physical exertion.

30% - MILD SYMPTOMS AT REST.

Limited ability to carry out some tasks which require physical exertion. May be able to work full-time.

40% - MILD OR MODERATE SYMPTOMS AT REST.

Variable ability to carry out tasks associated with normal daily activity. Unable to work part-time in a job involving frequent physical exertion. May be able to work part-time in other types of employment.

50% - MILD TO MODERATE SYMPTOMS AT REST.

Moderate to more severe exacerbation of symptoms following physical and/ or mental exertion. Unable to carry out any strenuous physical tasks. Able to perform light duties or deskwork for several hours a day provided adequate rest periods are provided.

linking the sangha around the world

Isn't Skype great? On Thursday evening we held a group meeting with our
Buddhist Ministry team: Dharmavidya and Susthama in Hawaii, Prasada
in France, Sundari, Bhaktika and Ray in Sheffield and Lisa at
The Buddhist House. Well, in the event, we had to write to each other
because there were so many of us - talking is better when there are
only two or three. (Sundari, Bhaktika, Lisa and I tested another system,
linking from various places in the UK but the sound when there are more
than two of you goes down to a talking-while-underwater quality.)

Of course, it would have been better to actually be together but, that
being impossible, this was very satisfactory - lots of discussion, catching
up with each other's news, joking, managing to understand other people's mis-spelling.

On Vox: live the questions now

    This beautiful poem was sent to a group of us who are Buddhist or interested in meditation and who have M.E.*  or other chronic illness - by a member of the group (Stillpoints) who is involved in an ongoing conversation about struggling with the koan of wanting to make a contribution to the world and being physically incapable. » Read more on Vox


*(Myalgic Encephalomyelitis, also known as Chronic fatigue syndrome (CFS), post-viral fatigue syndrome (PVFS)

blue gene baby

The more research done the better. It's only recently that most doctors concede that M.E., Chronic Fatigue, actually exists. Maybe there'll be, in time, a cure, or, at least, some treatment:

          Chronic Fatigue's Genetic Component Study Clarifies Predisposition to Syndrome

By Rick Weiss, Washington Post Staff Writer, Friday, April 21, 2006; Page A08

An intense battery of medical and psychological tests of people with chronic fatigue syndrome has strengthened the idea that the mysterious ailment is actually a collection of five or more conditions with varying genetic and environmental causes, scientists reported yesterday.

But though the syndrome comes in many flavors, these experts said, the new work also points to an important common feature: The brains and immune systems of affected people do not respond normally to physical and psychological stresses.

The researchers predicted that continued clarification of the precise genes and hormones involved will lead to better diagnostic tests and therapies for the ailment, which may affect close to 1 million Americans. read more

everything that slows us down and forces patience.....

From a Stillpoints friend:

Everything  that slows us down and forces patience,
everything that sets us back into the  slow circles of
nature, is a help. Gardening is an instrument of  grace.

Ideally, one would live as if one were  going to die
the next day. I mean, if you were going to die the
next day it  would be well worth sitting and watching
the sun set, or rise. It might not be  worth doing a huge laundry.

~ May Sarton

The Buddha on dealing with pain

Somehow, fortunately, I was able to work this out for myself a long time ago - or, maybe it was an idea popped into my mind from who knows where - but it's good to read this post on dealing with pain, and the sutra on which it is based.

Accepting pain is not resignation

'Even if your body is weak or painful, its still your home; it's how
 you're manifesting this life.  On the most basic, existential level,
 your body is also your penetration into reality: it is the only way
 that you can experience the transparency and interconnectedness
of  all things.' p33-34

 'Truly accepting pain is not at all like passive resignation.
 Rather, it is active engagement with life in its most intimate
 sense. It is meeting with, dancing at, raging at, turning toward.
To  accept your pain at this level, you must cultivate particular
 skills. After that, dealing with pain feels much more like an
 embrace, or the bond that forms between sparring partners,
than  resignation.' p25

~Darlene Cohen
Finding a Joyful Life in the Heart of Pain ISBN: 1570624674 (HB)
also published as Turning Suffering Inside Out: A Zen Approach to
Living with Physical and Emotional Pain (PB) ISBN: 1570628173

Ah - how apt

The word of the day is Lassitude.

For most of this year the M.E. has been less good - more so since June or July - and particularly the last few weeks. That's why a great deal of my blogging is lacking in 'oomph' - if I've managed to do something then I don't have the energy to blog about it. Meaning to take time out, meaning to say 'No' more often. But then.... I have just discovered an important meeting at the Uni this afternoon - one of a series of meetings that it took two years to get going. So I'll be setting off into this dark day, this slushy snow because it's not good if the series folds....