The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

Articles sorted by author: Lajla mark

An important note:

Before reading this research/advocacy information given in the links below, please be aware of the following facts:

1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.

A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The
A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.

In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.

2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context.

Articles by Danish M.E. patient/advocate Lajla mark

The murder of Myalgic Encephalomyelitis by Lajla Mark 2007

Wilkommen, Bienvenue, Welcome, Ladies and Gentlemen, smiled the compére and blew kisses to the audience.

- You are now going to witness real magic. - As an audience you are not supposed to see *how* it happens - but abracadabra .... before this show is over, I promise you, that the medical term Myalgic Encephalomyelitis will disappear right in front of your eyes.

- We can even make thousands and thousands of people suffering from Myalgic Encephalomyelitis totally invisible. Now, watch carefully, meine Herrschaft. This is truly magic!

THE ME SITUATION IN DENMARK - 17 years after official recognition

It has been a heart-breaking experience to follow this ME-down-the-drain-evolution in Denmark and to watch the ME patients (children and adults) being totally ignored - and totally confused about which disease they in fact suffer from.

We simply have to ask:

Would this have happened if we had stuck to the term ME as it was recognized and listed by our NIH in the first place?

Does this form a pattern that other countries ought to be aware of?

We certainly think so!

ME - ME/CFS - CFS History by Lajla Mark

For the first time, in 1959, the name Myalgic Encephalomyelitis (ME) was used officially for this disease in a article by Dr. E.D. Acheson in the Lancet. [4]

"From 1934-90, there were at least sixty-three outbreaks of epidemic proportions, all well documented, and distributed geographically in North America (29 outbreaks), the UK (16), the rest of Europe (11), Australasia (4), Africa (2), and Asia (1). One of the most studied, and possibly the most controversial outbreak, occurred at the Royal Free Hospital, London, in 1955, says Dr. Vance Spence, Universiy of Dundee, Scotland. List of epidemics from 1934 to 1980

.....If this version of CDC's ICD-10CM gets approved, it will be up to those countries using the name CFS or ME/CFS, to get the CFS and ME mess sorted out and distinctly separate CFS from ME - and also distinctly separate the diseases and conditions covered by the CFS umbrella term from each other.

Because of the worldwide confusion about ME and CFS amongst physicians and health authorities - and patients for that matter - it is of vital significance to clarify and emphazise the difference between these two. We need a new era where correct medical information about what ME is - and certainly is not - is highly needed.