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.

Activism and advocacy

Most of us are way too ill to march or protest in person but if all of us educated ourselves and then spoke up as much as we were able, who knows how strong our combined voices might be and what they might achieve? 

The idea behind this website was to try to create a guide to M.E. which doesn't just mindlessly repeat the same inaccurate myths and propaganda again and again and instead focuses on the available facts:

  • There is an abundance of hard scientific evidence that proves beyond a doubt that M.E. is a severely debilitating (and potentially fatal) organic neurological illness that has occurred for centuries in both epidemic and sporadic forms. Enough scientific evidence exists now to prove this literally more than a THOUSAND times over. This evidence spans over 70 years and has been published in prestigious peer-reviewed journals all over the world.
  • No evidence whatsoever exists to show that M.E. is caused or perpetuated by psychiatric or 'behavioural' problems. (Studies involving 'fatigue' sufferers who do not have M.E. have no more relevance to M.E. patients than patients with MS, or any other illness.) These theories exist solely because they are so financially and politically convenient and profitable on such a large scale. Scientifically they are no more viable than the theory of a ‘flat earth.'
The problem is not a lack of scientific evidence, but that the mountain of evidence which exists is continually ignored by many of those in positions of power who are abusing that power to further their own vested interests; helped immeasurably by the creation of the bogus disease category of 'CFS.'
 
This pretence of ignorance (particularly by government) has had devastating consequences for people with M.E. and has also meant that the number of M.E. sufferers continues to rise unabated. The general public worldwide - including sufferers themselves - have been lied to repeatedly about the reality of Myalgic Encephalomyelitis.

The decades of systemic abuse and neglect of the million or more people with M.E. worldwide has to stop. M.E. and CFS are not the same. Knowledge is power.

The HFME

Please see the About HFME page to find out more about participating in the advocacy work of the HFME.

On the uselessness of passivity (and compromising)....

These quotes are a brief but powerful argument against those 'CFS' advocates who preach passivity and 'making nice' to our abusers such as the CDC (those who claim that M.E. and CFS are the same and that M.E. is a psychological, behavioual or 'biopsychosocial' disorder involving fatigue etc.) in the naive (and delusional!) hope that they will stop abusing us (and denying reality) because we have behaved nicely enough and asked nicely enough.

This is a quote from Frederick Douglass, an escaped slave in the US in the nineteenth century, involved in the campaigns against slavery at the time.

"Those who profess to favor freedom and yet discourage agitation are people who want crops without plowing up the ground. They want rain without thunder and lightning. They want the ocean without the awful roar of its waves.

This struggle may be a moral one or it may be a physical one, but it must be a struggle. Power concedes nothing without a demand. It never did and it never will.

Find out what people will submit to and you will find out the exact measure of injustice and wrong which will be imposed upon them. And these will be continued until they are resisted in either words or blows or both. The limits of tyrants are prescribed by the endurance of those they oppress."

Frederick Douglass, 1857

For more on the uselessness of passivity and compromising see:

  • More medical 'firsts' from the CDC?
  • The CDC/CFIDS Association 'Faces of CFS' campaign 
  • M.E. advocacy and 'CFS' advocacy are not the same
  • Problems with the so-called "Fair name" campaign: Why it is in the best interests of all patient groups involved to reject and strongly oppose this misleading and counter-productive proposal to rename ‘CFS’ as ‘ME/CFS’
  • Problems with the use of 'ME/CFS' by M.E. advocates
  • Problems with 'our' M.E. (or CFS, CFIDS or ME/CFS) advocacy groups
  • Why the disease category of ‘CFS’ must be abandoned and
  • What is Myalgic Encephalomyelitis? 

    See also: 

    • A May 12 plea for those doing interviews

    Hi all,

    Can I make a plea for anyone doing an interview or providing information to the media...

    When you talk about the need for more biomedical research PLEASE be sure to stress that there is ALREADY a significant amount of research proving that ME exists as a discrete well-defined organic disease.  We know enough about it to know it affects a wider range of bodily systems than multiple sclerosis for example.  We know enough about it to know what systems are more likely affected (muscle, CNS, vascular) and which tests can help confirm diagnosis, guide an monitor management.  We even know that some biomedical treatments are available (as per Cheney etc) even if the NHS is extremely reluctant to endorse a non-psychiatric approach, and of course they probably don't get to the root cause as yet.

    We are not insisting on biomedical research to "prove that ME is a medical disease".

    We already KNOW that.

    The WHO knew that in 1969, the RSM knew that in 1978. There's a whole history of epidemics and some deaths dating back decades.  Pellew and Miles transferred the infection to monkeys in the 1950s, one of which died from heart failure, and the post mortem showed "disseminated lesions scattered throughout the nervous system from the brain to peripheral nerves and associated with perivascular round cell infiltration" (Parish, 1978). There are now [many hundreds of] published papers confirming organic disease, despite the mess of confusion of ME with vaguely defined fatigue syndromes.  Many of the old papers can be found on the MERUK web site, some in full, and Pubmed has abstracts of recent recent studies.

    Arguing that we need to "prove" ME is playing into the psychs' hands in appearing to agree we have nothing but a belief and no evidence, and so can't with confidence confirm the psychs are wrong. Which couldn't be further from the truth.

    The primary needs of research are for treatments, further delineating the etiology and for better diagnosis. Only biomedical treatment offers the practicality to counteract CBT/GET.  The cause of multiple sclerosis is hotly debated (virus, vitamin deficiency, genetic?) yet it doesn't have the clear historical pathogenic associations that ME has.

    It's really important for listeners/readers to get the message that ME is NOT an "enigma" or a "mystery", it's not a "belief system", "unexplained", "biopsychosocial", "difficult to define", nor a "diagnosis of exclusion" and DOES have objective signs.  It's what it says on the box, a serious multisystem disease (the people who say othewise have no place meddling in areas beyond their expertise), albeit one that needs much more medical attention and less glib, patronising Orwellian dishonesty.

    The reasons why so many professionals appear not to know about the disease is not lack of research, it's political, with the data being censored by the dominant UK CBT hegemony.  Of course, biomedical research is needed anyway, but the psychiatric empire is so powerful that it's unlikely biomedical research alone could break through without political pressure as well.

    (I also think GPs would feel less helpless if they knew it was possible to take a pro-active biomedical approach in investigating and using such treatments extant e.g. mitochondrial, antioxidant, neurological -- some of which *are* as safe as food -- rather than dispensing antidepressants as if they pay a commission.)


    Mike (last name supplied)