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Showing posts from January, 2016

How M.E. was never associated with Fatigue.

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Stonebird is delighted to post this important summary by Jerrold Spinhirne

The early description ME by E.D. Acheson in 1959, based on careful observation of 14 outbreaks of the disease, did not mention fatigue of any kind as a commonly observed or diagnostically useful symptom:

"All the outbreaks shared the following characteristics: (1) headache; (2) myalgia; (3) paresis [muscle weakness, partial paralysis]; (4) symptoms or signs other than paresis suggestive of damage to the brain, spinal cord or peripheral nerves; (5) mental symptoms; (6) low or absent fever in most cases; (7) no mortality. In addition, (1) a higher attack frequency in women; (2) a predominantly normal cerebrospinal fluid, and (3) relapses have occurred in almost all outbreaks. In eleven of the fourteen epidemics symptoms which suggest activity of the disease have persisted for months or years in a few cases, and in eight instances there was an apparent predilection for the nursing or medical professions. Lymp…

An open letter to my wife, following David Bowie's death.

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Dear Linda,

They are still marvelling at Bowie’s death; how well he looked in his sharp suit, what a masterpiece it was.

As you know, I agree. You may never be able to view it, but I have tried to convey to you what a profoundly shocking experience Bowie’s last video “Lazarus” is. It is difficult - being limited to so few words, that must be spoken quietly, softly, with as little body movement as possible.

Even then things are infinitely fragile. The wrong information, conveyed at the wrong moment, in the wrong tone, being far too much to take in and comprehend, is likely to throw you into excruciating, paralytic agony, ruin the day, the week or longer, cause hours of suffering torment.

Last night, late, the pain radiating from your slumped body was tangible. I didn’t need to look into your dark, sunken, seared eyes, to feel it as something malicious , alive, unspeakable, jagged, gut-tearing. “I can’t bear it anymore”, that soft cry, after twenty three years of non-stop physical torme…

36 Issues worth pointing out IF A CLINICIAN REFUSES TO “BELIEVE IN ME” OR WRONGLY CONSIDERS IT TO BE A PSYCHIATRIC CONDITION

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(This is taken from :
“Severe ME : Notes for Carers” : http://stonebird.co.uk/Notes/index.html)
Many world-class clinicians state that ME is either an infectious disease, or an auto-immune disease as a direct result of infectious insult and recognise ME as a complex neuro-immune disorder accompanied by chronic low-grade inflammation, increased levels of oxidative and nitrosative stress.(Maes et al 2014), requiring a skilled biomedical response. ME was recognised as a specific disease entity by The Royal Society of Medicine in 1978 and by the World Health Organisation since 1969 as an organic neurological disease, ME is currently classified under ICD code G93.3. In the USA, ME ranks second only to HIV as the cause of serious, long-term illness. (Hooper 2004)Cycles of severe relapse are common, as are further symptoms developing over time. Around 30% of cases are progressive and degenerative and sometimes ME is fatal. (National CFIDS Foundation). Two reviews have concluded that, “Subs…

There is little hope...

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How did we get to this :

An article on CoCure calling for "CFS/ME/SEID to be properly incorporated into mainstream medicine. "

https://batemanhornecenter.org/icd-10-code-for-mecfs/

You know, we stand on the shoulders of giants,the Ramsays, the Dowsetts, the Hennesy's, but when the IOM, ignoring the volumes of research outlining the Neurological, Autonomic, Neuroendocrine and Immune system malfunctions that constitute M.E, ignoring Severe ME, claimed that M.E. and CFS “denote conditions with similar symptoms” and proposed "SEID", it was as if they had effectively done what the psychiatric lobby have been trying to do for years... bury ME under fatigue :
http://carersfight.blogspot.co.uk/…/a-tragic-mishmash-of-id…

There is NO SUCH THING as "CFS/ME/SEID" !!!

All the time that ME, as defined by Ramsay and the WHO , is confused with Chronic Fatigue, or is ignored or wrongly misrepresented as Chronic Fatigue Syndrome, or SEID, there will co…

An Exercise in Social Engineering

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The Pain in Caring

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Few are able to bear the pain of watching, waiting, being with the person who suffers, especially if that
pain is drawn out over years and years.There is pain in caring for someone as ill as my wife; I made this list:

1. The pain of my presence, my voice, my thinking even, my attempts to try and be quiet, increasingly being too much for her to bear.
2. The pain of her total suffering, paralysis, deep isolation from anyone and everything, the absolute littleness of her life.
3. The pain of the immensity of the illness, in its face we are only a dot - at least that is what came to me in a reflective drawing recently- a powerful dot of fire though, that will never give up!
4. The pain of the hours spent coping, my wife never comfortable, never finding any relief anywhere, moving from lying to sitting, always being pulled back into paralysis and exacerbation of symptoms.
5. The pain of feeling less and less confident, hopeful, certain of a cure one day.
6. The pain of getting older, it has been…