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.

M.E. tests (in brief)

M.E. is a distinct, recognisable disease entity with several unique features that is not difficult to diagnose within just a few weeks of onset.  Although there is as yet no single test which can be used to diagnose M.E. there are (as with Lupus, multiple sclerosis and ovarian cancer and so on) a series of tests which can confirm a suspected M.E. diagnosis with confidence. Virtually every M.E. patient will also have various abnormalities visible on physical exam. If all tests are normal then a person does NOT have M.E.

M.E. tests

M.E. is a distinct, recognisable disease entity that is not difficult to diagnose and can in fact be diagnosed relatively early in the course of the disease, within just a few weeks, providing that the physician has some experience with the disease. There is just no other disease that has all the major features of M.E.

 

Objective evidence of quantifiable organic abnormalities in M.E. patients has existed since the 1950s. As with a wide variety of illnesses – lupus, multiple sclerosis, and ovarian cancer for example – there is as yet no single test which can diagnose M.E. in all patients. Therefore, like these other illnesses, M.E. must be diagnosed by taking a detailed medical history, noting the type and severity of symptomatology and other characteristics of the illness and the type of onset of the symptoms. (An acute or sudden onset of symptoms is always seen in M.E. and this onset type rules out a wide variety of other illnesses associated with gradual onset). A series of tests may also then be necessary to rule out or confirm a suspected M.E. diagnosis.

 

One cannot test for ‘CFS’ but M.E. is not the same thing as ‘CFS’ (or ‘ME/CFS.’) The presence or absence of ‘fatigue’ is largely irrelevant in determining an M.E. diagnosis except in that its presence may of course make the diagnosis of a large number of well-known fatigue causing illnesses considerably more likely (depression, vitamin deficiency or malignancy for example) (Hyde & Jain, 1992). M.E. is not a diagnosis of exclusion or an untestable disease. Tests will only all be normal in M.E. patients – as with all illnesses – if the wrong tests are conducted, or if those tested do not in fact have M.E. (Hyde 2007, [Online]) (Hyde 2006, [Online]) (Chabursky et al. 1992, p.22). 

 

Contrary to common disinformation erroneously linking M.E. with ‘CFS,’ it is not mere ‘fatigue’ that defines M.E. but central nervous system (CNS) dysfunction. M.E. represents a major attack on the CNS by the chronic effects of a viral infection which targets the brain: an enterovirus. As M.E. expert Dr Byron Hyde explains:

The one essential characteristic of M.E. is acquired CNS dysfunction. A patient with M.E. is a patient whose primary disease is CNS change, and this is measurable. We have excellent tools for measuring these physiological and neuropsychological changes: SPECT, xenon SPECT, PET, and neuropsychological testing (2003, [Online]).

 

Tests which together can be used to confirm an M.E. diagnosis include:

  • SPECT and xenon SPECT scans of the brain.
  • MRI scans of the brain.
  • PET scans of the brain.
  • EEG/QEEG brain maps.
  • Neurological examination. Neuropsychological testing.
  • The Romberg test.
  • Immune system tests.
  • Insulin levels and glucose tolerance tests.
  • Erythrocyte Sedimentation Rate (ESR) tests.
  • Circulating blood volume tests.
  • 24 hour Holter monitor testing.
  • Tilt table examination and standing/sitting/reclining blood pressure tests.
  • Exercise testing and chemical stress tests.
  • Physical exam.

 

These tests are the most critical in the diagnosis of M.E., although various other types of tests are also useful.

 

M.E. expert Dr Byron Hyde’s Nightingale Definition of M.E. also now makes diagnosis easier than ever before even for those with no prior experience in diagnosing M.E. This is a pure M.E. definition and, most importantly, it defines M.E. as testable  (Hyde 2007, [Online]) (Hyde 2006, [Online]) (Hyde 2003, [Online]) (Dowsett 2001a, [Online]) (Dowsett 2000, [Online]) (Hyde 1992 p. xi) (Hyde & Jain 1992 pp. 38 - 43) (Hyde et al. 1992, pp. 25-37) (Dowsett et al. 1990, pp. 285-291) (Ramsay 1986, [Online]) (Dowsett n.d., [Online]) (Dowsett & Ramsay n.d., pp. 81-84) (Richardson n.d., pp. 85-92).

More information

To read or download an extended and fully referenced version of the above text, please see the Testing for M.E. page.

Additional note for patients: Despite the existence of the tests for M.E. described in this paper, the unfortunate reality is that many people who suspect they have M.E. do not have access to the appropriate tests or to doctors who are able to make the diagnosis due to political interference in science (helped immeasurably by the creation of the bogus disease category of 'CFS').  See Testing for M.E.: Plan D for discussion of the ways in which patients seek a diagnosis in practice.


Additional relevant links:

Extra information: Medical science vs politics

M.E. is not difficult to diagnose, or to distinguish from ‘CFS’ or any other fatiguing illnesses. M.E. is also not ‘difficult to define’ or ‘mysterious’ or ‘medically unexplained’ or a mere ‘diagnosis of exclusion.’ These are characteristics of ‘CFS’ but not of M.E.

M.E. is no more difficult to diagnose through using a series of tests than is MS. In fact, it has been suggested that M.E. diagnosis is significantly less difficult and more reliable than that of MS! We can also be a lot more certain about the cause of M.E., compared to MS. The cause of MS is hotly debated, while the fact that M.E. is caused by a virus is well established beyond doubt and there is overwhelming evidence that M.E. is caused by an enterovirus.

On a purely scientific level, we have more than enough information to reliably diagnose patients with M.E. using objective tests (and by taking detailed case notes and conducting a detailed physical exam etc.) within just a few weeks of the onset of the disease.

If the will and the funding were there, scientists could right now very easily make sure that studies contained a 100% M.E. population – just as they do with MS patients or patients with Lupus and so on. Scientifically, it would be no more difficult to do this for M.E. than with these other diseases.

The problem is not that these tests don’t exist, but that doctors – and many patients – are unaware of this information on testing, that it is not generally accepted due to the nefarious influence of political and financial vested interest groups, and that there are overwhelming financial and political incentives for researchers to IGNORE this evidence in favour of the bogus ‘CFS’ (or ‘subgroups of ‘ME/CFS’) construct, and so on.

For more information see: Testing for M.E. and Dr Hyde's The Nightingale Definition of M.E. plus Are we just 'marking time?' Why are we waiting to act when tests for M.E. exist RIGHT NOW, and the need for activism/action is so very urgent? See also: See M.E. vs MS: Similarities and differences.

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Exciting book news!

Click here to purchase the first HFME book!


The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

Paperback $18.95
Hardcover $22.95