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.

Testing for M.E.: Plan D

Testing for M.E.: Plan D Diagnostic tests for M.E. exist, as described in Testing for M.E. Despite the existence of these tests, 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 a diagnosis.  This paper describes the ways in which patients seek a diagnosis in practice, and offers a ‘Plan D’ for patients who are forced to diagnose themselves.

The full-length version of this paper can now be downloaded in Word or PDF format, see the section below for details.

Testing for M.E.: Plan D (DRAFT)

An excerpt:

A correct diagnosis is half the battle won. However, being medically assessed by a knowledgeable doctor who is able to diagnose M.E. correctly is far easier said than done, unfortunately. Scientific diagnostic methods and ethical concerns have been skewed by politics and financial concerns. For more information on why this is the case, please see: Who benefits from 'CFS' and 'ME/CFS'? and What is Myalgic Encephalomyelitis?

On a purely scientific level, we have more than enough information to 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, doctors could right now be given the information to diagnose all cases of suspected M.E.  Scientifically, it would be no more difficult to do this with M.E. than with other diseases such as Multiple Sclerosis or Lupus.

A series of tests can confirm or eliminate a diagnosis of M.E.  If all tests are normal then a person does NOT have M.E. M.E. is no more difficult to diagnose through using a series of tests than MS. In fact, it has been suggested that diagnosis of M.E. is significantly less difficult and more reliable than that of MS. 

The problem is not that tests for M.E. don’t exist.  They do, but doctors – and many patients – are unaware of this.  The information on testing is not generally known and accepted due to the nefarious influence of political and financial vested interest groups. There are overwhelming financial and political incentives for researchers to IGNORE the evidence on the diagnostic tests for M.E. in favour of the bogus and untestable ‘CFS’ (or ‘subgroups of ‘ME/CFS’) construct, and so on.  Thus doctors who gain their understanding of M.E. from such flawed research – as almost all do – wrongly believe that the disease cannot be tested for. 

Diagnostic tests for M.E. exist, as described in Testing for M.E.  Despite the existence of these tests, 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 a diagnosis. There are probably four main routes a patient’s quest for a confirmation of the diagnosis of M.E. can take.  For the purposes of this paper I’ve labelled them Plans A. B, C and D: 

 

Plan A. A very small number of lucky patients will be able to see a M.E. specialist such as Dr Byron Hyde, and have their suspicion of a M.E. diagnosis either confirmed or denied, with a very high degree of accuracy, by appropriate testing and taking a detailed case history. This is the best possible scenario.

 

Plan B. The second best option would be to have a doctor who is not a M.E. expert but is sympathetic and intelligent and willing to use Dr Hyde’s new testable Nightingale Definition of M.E. to make a diagnosis, again by appropriate testing and taking a detailed case history. This also has a high degree of accuracy.

 

Plan C. The patient may be unable to get a doctor to follow the Nightingale Definition of M.E. to make a correct diagnosis.  The doctor may, however, agree to perform some tests which are relevant to M.E.; the doctor may not be willing to order expensive brain scans, but may perform cheaper and simpler tests.  These tests may add significant weight to a suspected M.E. diagnosis.  Unfortunately the doctor may or may not be able to interpret the results of these tests.   Plan C can be subdivided into:

  • Plan C(a) in which the doctor can be trusted to interpret the results of the tests, and
  • Plan C(b) in which the doctor is ignorant, so the patient is forced to interpret the results for themselves. 

This method may have a high degree of accuracy, if a series of these tests are done and most or all are highly indicative of M.E., and if the patient’s case history and core symptoms and illness characteristics also fit M.E.

If only a small number of these tests are done however, or the results are inconclusive or the case history/symptom profile doesn’t fully tally with M.E. then the patient may still be left uncertain as regards a M.E. diagnosis.

Tests which patients may find doctors more willing to do, compared to expensive brain scans etc., and which are indicative of M.E. (particularly when done in combination) include the following:

  • Romberg test or tandem Romberg test (positive in more than 95% of M.E. patients) – this is a test which can be done in your doctor’s rooms.
  • Neurological examination – this is a test which can be done in your doctor’s rooms.
  • Poor man’s tilt table test – this is a test which can be done in your doctor’s rooms. This involves taking your blood pressure and pulse while sitting and then while standing in order to tests for POTS etc. See Testing for M.E. for details.
  • Low natural killer cell numbers/percentage and function (cytotoxicity) – this is a blood test. This test is abnormal in most M.E. patients, often strikingly so. The level of NK cells and NK Cells function also seems to correlate with illness severity.
  • Apoptosis is often raised (this is programmed cell death: known to be raised in infection) – this is a blood test
  • Abnormal ANA (indicates autoimmune disease) – this is a blood test
  • Glucose tolerance test – this is a blood test
  • An unusually low sedimentation rate of <5mm/hr is common in M.E. and can occur in 40% or more of patients (although there may also be brief periods where there is an elevated rate >20mm/hr). ESR rates as low as 0 have been documented in M.E. patients, and levels of 1 and 2 are very common. This is a blood test (this test is included if you have a full blood count test done). Dr Byron Hyde reported in 1989 that, “To my knowledge, there are only five diseases that have a pathological low sedimentation level: Myalgic Encephalomyelitis, sickle-cell anemia, hereditary sperocytosis, hyper-gammaglobulinemia [and] hyper-fibrogenemia.’
  • A 24 hour Holter monitor (a type of heart monitor) may show repetitively oscillating T-wave inversions. It is important that doctors know what they are looking for with this test or else patients may be given a falsely normal report. See Testing for M.E. for details. This test may be able to be conducted at a patient’s home. If you are housebound, ask the people fitting/supplying the Holter monitor if this is possible.
  • Physical exam. See Testing for M.E. for details.

Patients may also find that once abnormalities are shown on some of these tests, doctors may then be more willing to do more expensive or involved tests such as brains scans.

Note that of course none of these tests are unique to M.E. and are of course abnormal in other diseases. Many of the symptoms of M.E. are also seen in many other diseases; a person must have the core/unique symptoms and features of M.E. (and combinations of symptoms and features) to be given a correct M.E. diagnosis.

It is the combination of a series of these abnormal test results, combined with a case history and core symptom profile that fits M.E. that strongly indicates M.E., not merely abnormalities shown on a small number of these tests, or a patient merely having some of the same minor symptoms as a M.E. patient.

 

Plan D: Sadly, all most patients are left with is plan D. They have little or no appropriate medical care at all. Patients may only be given the most basic of general tests, and when these show no abnormalities (as is the case with up to 90% of M.E. patients) further testing is denied, and often the very concept that the patients is ill at all is denied. (This despite the facts that as with all illnesses, of course tests will come out ‘normal’ if completely the wrong tests are done!)...

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

He writes:

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