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Response to BACME paper

25% Group and Stonebird
How not to care for someone with Severe ME
Response to BACME Working Group on Severe CFS/ME
Shared Clinical Practice Document Version 1

When you work with someone who has Severe ME you need to be more sensitive and aware than you can possibly imagine.  Harm, even death for some, may follow poor treatment, care and ignorance. The frailty of someone with  Severe/Very Severe ME cannot be exaggerated nor adequately described. You need to take the greatest of care.

BACME paper

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HypermobilityHypoglycaemia

If knowledge is power
then here's a message from a powerful person! Well, at the very least, empowered.
I have been living with widespread symptoms since 1979, and was formally diagnosed with Severe
M.E. In 1987.
Recently, I discovered three things:
The first, has led me to a clear understanding of why I am so severely disabled.
The second, has made an incredible difference to my health and daily life.
And, thirdly, now that mainstream technology has lined up with my needs, I'm able to
dictate onto an iPad and share this with only minimal hilarious errors.

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A summary of “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” by Tom Kindlon

DSCF0217 - Document quality photoThe above paper was recently published in a peer-reviewed journal. Those interested in reading more can access the full paper at the link below.
The paper uses the acronyms ME/CFS to represent the illness, as CFS is the main term used in the papers referenced.

The purpose of this paper is “to explore issues of safety for ME/CFS patients in regards to GET and the form of CBT that involves scheduling increasing activity and/or exercise.”

“Using a generic definition of ‘harms’, the harms associated with GET (or CBT) could be defined as the ‘totality of possible adverse consequences of GET (or CBT)’”
It is notes that group average improvements on a measurement scale – the conventional measure cited in many published papers - are “not the same as meaning no individual deteriorated.”

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A summary of “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” by Tom Kindlon

The above paper was recently published in a peer-reviewed journal. Those interested in reading more can access the full paper at the link below.
The paper uses the acronyms ME/CFS to represent the illness, as CFS is the main term used in the papers referenced.
The purpose of this paper is “to explore issues of safety for ME/CFS patients in regards to GET and the form of CBT that involves scheduling increasing activity and/or exercise.

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 International Consensus Criteria for Myalgic Encephalomyelitis

Myalgic Encephalomyelitis – Adult & Paediatric: International Consensus Primer (ICP) for Medical Practitioners (2012) is described as “a one stop, user-friendly reference that specifically targets primary care physicians and specialists in internal medicine”.

This publication should be very helpful to medics seeking to provide appropriate care and treatment to patients with severe ME .

The Primer includes a summary of pathophysiological findings, and presents the International Consensus Criteria for diagnosis, and diagnostic and treatment guidelines.

It is edited by Bruce M Carruthers MD CM FRACP(C) and Marjorie I van de Sande B Ed

The credentials of the panel that put the Primer together are impressive: “ICP represents the collective wisdom and experience of the members of the panel gleaned through research and hundreds of thousands of hours of clinical investigations, upon which the ICC and ICP are based.”

The panel hopes that the outcome of the Primer will be enhanced clarity and understanding of ME, consistency of diagnosis, and optimal treatment internationally.

Conditions of posting are on page 2:

This primer is a not-for-profit educational document.

In our efforts to enhance the understanding of ME and promote international consistency in optimal
clinical identification and treatment, this booklet may be downloaded, posted on websites, and
reprinted providing ALL of the following conditions are met:

1. This booklet must be posted, translated, or reprinted in its entirety, with no abbreviations,
additions, deletions, or changes in text and content including the inside and outside covers, in
any manner whatsoever.

2. The authorship information is retained and credited as the source.

3. No profit can be made by any individual, organization, company, university, or otherwise.


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Severely Affected Patients Respond to B-cell Depletion Therapy

Back in May I attended the 2011 Invest in ME Conference and heard of a potentially important discovery from two Norwegian oncologists, Dr. Øystein Fluge and Professor Olav Mella. Like many keynote medical discoveries in the past, this happened quite by accident. Uniquely though, the research concerned severely affected ME patients.

Nimodipine use in M.E. / CFS (word version)

PDF version

SP - June 2008 - updated 2013

"...I believe effective medication can dramatically improve the health of a person with CFS for the better and change general practioners' perceptions of the patient as improvements occur.  Every one feels more positive.  Something can be done now."  Dr. Marilyn McNeill  (Ref. 33.)