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.

Finding a good doctor when you have M.E.

Finding a good doctor when you have M.E.

Sections include:

  • The difficulties in obtaining an accurate M.E. diagnosis are not due to a lack of appropriate science or tests
  • Testing for M.E. Plans A, B, C and D
  • Links to some of the most well-known doctors knowledgeable about M.E.
  • Educating a willing and intelligent doctor about correct M.E. diagnosis
  • Different doctors for diagnosis and for treatment - an important distinction!
  • Finding a doctor that can devise an individualised orthomolecular / holistic / environmental medicine program for you to help your body heal
  • Websites which can help you find a doctor specialising in orthomolecular / holistic / environmental medicine near you
  • Quick diagnosis is key with M.E.
  • Avoiding overexertion in the early stages of M.E. is absolutely ESSENTIAL
  • Calling all good doctors! Add your name to the future HFME international good doctor's list.

Part 2 includes the following sections:

  • Other problems faced by M.E. patients looking for correct diagnosis and treatment
  • What are some basic principles of orthomolecular / holistic / environmental medicine?
  • Serious problems to be aware of with many or even most of the natural therapists currently in practice


This text can be downloaded in the all-in-one 100 page 'HFME Tips' document in a printer-friendly Word format, PDF format or as a large-print PDF

Finding a good doctor when you have M.E.

Copyright Jodi Bassett January 2011. This version updated February 2011. From www.hfme.org  

The question we are probably asked most often at HFME is 'where can I find a doctor in my area that will test me appropriately for M.E. and is experienced in treating M.E.?'

The short answer sadly is that there are almost none. If there were lots of them, we wouldn't have started the HFME. At the very least the M.E. doctors list would be featured VERY prominently on the site!

The lack of doctors educated about M.E. etc. is WHY we are trying to instigate and support real political change in this area, and why we need your help with this, if things are ever to change. It is pretty much the whole point! This lack of basic knowledge in the medical system and lack of knowledgeable doctors is why the HFME exists and why we work so hard to try and effect real change in this area through education.

Unfortunately progress is difficult and very slow. Far fewer patients are interested in participating in M.E. activism as are interested in finding a doctor. The lack of doctors and good medical care also contributes hugely to the severe disability level of many M.E. patients and makes contributing to activism efforts almost completely impossible for many patients. It's a catch 22 situation. If we all had better medical care we'd be far more able to participate in real advocacy, but to get this better medical care we first need a lot of very solid advocacy.

That is the bad news. Now for the good news...

While finding a doctor knowledgeable about correctly diagnosing and testing for M.E. is extremely difficult, finding doctors which can help with treatments and improving the condition generally to some extent using basic principles which apply to many different diseases similar to M.E. is far less difficult.

There are also measures that patients can take all on their own to investigate the diagnosis of M.E. and to help to treat M.E. and stop it from worsening, right now.

Thus the situation for M.E. patients is dire but not completely without some glimmers of hope also, as this paper will explain in more detail.

 

The difficulties in obtaining an accurate M.E. diagnosis are not due to a lack of appropriate science or tests

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 unfortunately far easier said than done. 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, 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 diagnosed by tests.(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.

 

Testing for M.E.: Plans A, B, C and D

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 an 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 an 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.

See appendix 1 for a brief description of the case history, core symptoms and illness characteristics which fit M.E.

----

Appendix 1:


Case history:

- Acute onset

- Virus infection evident 1-4 weeks before onset

Core symptoms:

- Significant neurological symptoms

- Significant cognitive problems which worsen with overexertion (problems with speech and talking, reading and writing, basic mathematics, memory and memory recall and learning new tasks)

- Problems coping with orthostatic stress

- Problems coping with sensory inputs such as noise, light and movement

- Lack of temperature regulation

- Muscle weakness, paralysis, pain (affecting all muscles including the heart and which may also affect breathing and vision)

- Blood pressure and pulse abnormalities due to overexertion

- Problems with balance, vertigo and proprioception

- Sensitivities to many different foods, drugs and chemicals

- Significant gastrointestinal and digestive disturbances

- Sleep disorders (reversed sleep/wake cycle, difficulty initiating sleep, lack of deep sleep etc.)

- Temporal lobe seizures and other types of seizures

Illness characteristics:

- Patient is immediately able to maintain 50% or less of their pre-illness activity level

- Severity of symptoms waxes and wanes markedly

- Many symptoms are caused by reduced circulating blood flow of up to 50%

- Muscle strength is normal at first, but muscles quickly become weak/paralysed with use

- Delayed exacerbation of symptoms after overexertion (typically 48 hours)

- Severe exacerbation of symptoms with only minor activities beyond the patient's limits

- Overexertion can seriously harm or kill the patient

- Rest in the early stages of the disease brings the most positive long-term outcome

- A long-term or lifelong disease affecting children and adults

- Occurs in outbreaks as well as sporadically

-----

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 and 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 the results 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!)

Alternately, sometimes minor abnormalities are found in basic testing, for example hypothyroidism, and these minor issues are incorrectly assumed to be the sole or primary medical problem. When the patient exhibits little improvement in their condition as these minor secondary issues are given standard treatments, patients are often bizarrely accused of exaggerating (or even outright faking) their symptoms and disability.

With no access to appropriate medical care or testing at all, all a patient that suspects that they have M.E. can do is read as much as possible about M.E., and carefully evaluate their own case study to see how well it fits, or doesn't fit, detailed and accurate accounts of M.E. This can be very useful, up to a point, as accurate descriptions of M.E. which describe the unique features of M.E. will resonate very strongly with genuine M.E. patients. (Most notably, descriptions by Dr Byron Hyde, Dr Elizabeth Dowsett and Dr Ramsay.)

The biggest problem with this endeavour, however, is that much of what is written about M.E. is of questionable or very poor quality, and almost all of it is tainted by the concept of 'fatigue' and 'CFS.' Many patients will relate to poor quality or inaccurate information given about M.E. - or 'CFS' or 'CFIDS'- that do not have M.E. but instead some other disease which is often misdiagnosed as 'CFS.' Just as bad, some very poor quality 'CFS' information will sometimes be given using the term M.E.

The concept of 'ME/CFS' and vague mixed definitions such as the Canadian 'ME/CFS' criteria confuse the issue even further. Many patients qualify for a 'ME/CFS' diagnosis (or rather, misdiagnosis) and relate to information given about 'ME/CFS' that do not have M.E. (This would include patients with Fibromyalgia, Lyme disease, athlete's over-training syndrome, various post-viral fatigue syndromes, Behcet's disease, Multiple Sclerosis, B12 deficiency and so on.) The Canadian 'ME/CFS' criteria is not a definition of M.E., merely another meaningless and unhelpful 'CFS' definition which happens to add in a small amount about some of the least important aspects of M.E. As with the 'CFS' definitions, it selects a heterogeneous (mixed) patient population.

Patients unsure of their diagnosis are recommended to look carefully at descriptions of some of the illnesses most commonly misdiagnosed as 'CFS' (or M.E.). See: The misdiagnosis of CFS. If you aren't sure what your diagnosis is, but you are sure it isn't M.E., then you need to find a good doctor, preferably a skilled diagnostician. You do NOT need to see any type of 'CFS' expert, and in fact should avoid such individuals! A diagnosis of 'CFS' can only ever be a misdiagnosis.

For some patients however, this may still leave not quite 100% sure of whether or not M.E. is the correct diagnosis. The 'D' in plan D, may as well stand for 'desperate.' Plan D, means having no plan at all and having access to no appropriate medical testing at all. Being left in 'no man's land' as regards your suspected M.E. diagnosis. Fairly sure but... not quite certain, due to a lack of appropriate supportive objective testing.

So what do you do if you are in this terrible situation? This is a question I am asked very often, in personal and HFME emails. It is very hard to know how to reply. After much thought, I have written a new paper on this topic. See the paper Testing for M.E.: Plan D for discussion of the ways in which patients seek a diagnosis in practice, and a 'Plan D' for patients who are forced to diagnose themselves.

 

Links to some of the most well-known doctors knowledgeable about M.E.

There are a very small number of doctors very experienced in diagnosing or treating M.E. While not every patient can see one of this select group of doctors, their names are listed here for those that may possibly be able to.

  • Dr Byron Hyde in Canada is the best doctor there is for the diagnosis of M.E. Dr Hyde may or not be taking new patients, but you may be able to book a phone consult with Dr Hyde, or have MRI or other brains scans interpreted for you during a phone consult. The NRF may also be able to recommend a doctor in your area that is familiar with Dr Hyde's Nightingale definition of M.E. Dr Hyde is a very respected preeminent M.E. expert.
  • Dr Chia in the USA is an enteroviral expert with a lot of experience in treating patients with enteroviral infections, including M.E. patients. He offers treatment with interferon and matrine, among other treatments. Dr Chia's offices can also be contacted in order to arrange enteroviral testing via post.
  • Dr Paul Cheney in the USA has a lot of experience in treating patients with cardiac insufficiency and the other neurological and mitochondrial issues caused by M.E. While he does not make the proper distinctions between M.E. and 'CFS' at all times historically and with definitions, it seems that Dr Cheney is a very good choice when it comes to treating M.E. for those that can afford to see him.

Dr Hyde and Dr Cheney in particular are very expensive doctors to see. Please note that while Dr Chia and Dr Cheney do have a lot to offer in the area of treatment, they do not properly make the full distinction between M.E. and 'CFS' unfortunately.

Remember that while only a few patients with M.E. can actually see Dr Hyde, every M.E. patient can and should be familiar with his Nightingale definition of M.E. This is a testable M.E. definition and not merely yet another redefinition of the bogus disease category of 'CFS.'

The same is true of Dr Chia and Dr Cheney. Much of their work on treatment theories is available online for free, or for a fee in the case of Cheney's latest work.

 

Educating a willing and intelligent doctor about correct M.E. diagnosis

If your doctor is not as knowledgeable about M.E. as he or she could be, but is the best you can find, you may also like to bring in printed research or papers on M.E. that you think might be useful. As there is only one Dr Hyde, sometimes the best option many of us have right now is to find a doctor that does not know much about M.E. but is compassionate, intelligent and willing to learn and to read Dr Hyde's Nightingale M.E. definition.

It will also be helpful to write a detailed medical history before your first visit.

It is also very important that you are able to have some of the tests which can be used to confirm a M.E. diagnosis, to remove all doubt that this truly is the only correct diagnosis for you. For more information see: Testing for M.E. and Testing for M.E.: Plan D

Note that some charities may offer doctor recommendations although the quality of the doctors recommended here is very variable, or even abysmal, as there really are almost no actual M.E. charities anymore even though some charities do wrongly still use terms such as 'ME/CFS' or even M.E.

 

Different doctors for diagnosis and for treatment - an important distinction!

It is important to be aware that the doctor that is best qualified to diagnose you with M.E., will not always be the best doctor to advise you on treatments.

In an ideal world one doctor would do both of these things, but in practice it is probably best to look at the questions of diagnosis and treatment, very separately.

Many doctors that may not necessarily be appropriately educated in making a diagnosis of M.E. have a lot to offer in terms of treatment. Some of these doctors may also be willing to learn about correct M.E. diagnosis and so printing out a copy of the Nightingale M.E. definition to give to them is recommended, where you think this may be appropriate and helpful.

 

Finding a doctor that can devise an individualised orthomolecular / holistic / environmental medicine program for you to help your body heal

Finding a doctor that is knowledgeable about M.E. specifically is extremely difficult. However, finding a doctor that is experienced in treating diseases similar to M.E. (such as MS or Lupus etc.) is far less difficult.

The differences between the different types of medicine are as follows:

  • Orthomolecular medicine is a system for the prevention and treatment of disease based on the knowledge that each person's biochemical environment is genetically determined and individually specific. Therapy involves supplementation with substances naturally present in the body (for example vitamins, minerals, trace elements and amino acids) in the optimal amounts for that individual at that time to correct nutritional deficiencies and the resulting biochemical abnormalities. The administration of vitamin C in therapeutic doses is one of the most important and commonly used means of treatment in Orthomolecular medicine.
  • Environmental medicine deals primarily with the effects of the environment on humans including water and air pollution, vaccinations and travel, etc.
  • Holistic medicine is a system of medicine which considers man as an integrated whole, or as a functioning unit. It is characterized by its focus on the whole person as a unique individual, on the energy of the body and its influence on health and disease, on the healing power of nature and the mobilization of the body's own resources to heal itself, and on the treatment of the underlying causes, not symptoms, of disease.

Other terms may also be used, such as nutritional balancing, nutritional medicine, biomedical treatment, integrative medicine, functional medicine, nutrigenomics and natural medicine etc., and others may prefer to avoid any type of new terminology whatsoever.

Good doctors in this field have a lot to offer M.E. patients. Far more than very nearly all 'CFS' or 'ME/CFS' or 'CFIDS' specialists or centres, most of which deal with ways of coping with mere 'fatigue' which are inappropriate or harmful for those who actually have M.E. Generally speaking, 'CFS' or 'CFIDS' or 'ME/CFS' experts or 'treatment centres' should be avoided by M.E. patients like the plague!

If possible, find an expert in one of these fields (or more than one of them) that is also a qualified doctor so that you can also have any tests you may need - both private and practitioner-only. Appropriate testing plays a very important role in this type of medicine, as do some prescription drugs at times. All useful treatments and tests are used, without bias. The best is taken from each different type of medicine and all of the resources that are available. Many orthomolecular, holistic and environmental practitioners are also doctors.

In her book 'Detoxify or Die' Dr Sherry Rogers explains,

I have to laugh when people ask me if I do alternative, herbal, acupuncture or holistic medicine. 'No,' I reply. 'We do state-of-the-art medicine. In other words, we find the biochemical, nutritional and environmental causes and cures rather than blindly drugging everything. Sure, herbs are gentler, safer and more physiologic than drugs and holistic medicine attempts to incorporate many diverse modalities, etc. But there is no substitute for finding the underlying biochemical causes and cures. This is real medicine. This is where medicine should and would have been decades ago, if it had not been abducted by the pharmaceutical industry.

For more information on this topic the following papers are essential reading:

Possible problems getting treatment advice from doctors not educated about M.E. specifically include:

  • May not understand all the bodily systems affected by M.E. and M.E. pathology.
  • While the best doctors will be aware that 'CFS' is just a wastebasket diagnosis and be able to tell right away that someone with M.E. has obvious neurological and cardiovascular pathology, some good doctors may confuse M.E. with 'CFS' or not see past a 'CFS' misdiagnosis. 'CFS' will also mean very different things to each of these types of doctor, including thyroid or adrenal issues, post-viral fatigue syndromes, burnout, emotional issues and so on.
  • Doesn't understand the fragility of M.E. patients, how disabled they are physically and cognitively and how easily they can relapse with even minor exertion such as attending a medical appointment.
  • Doesn't understand or expect the degree of relapse which can occur with treatments and need to go VERY slow compared to other patients. M.E. patients may need to go far more slowly with new treatments, especially treatments that aid detoxification, than other very ill patients.

Despite these drawbacks, good doctors in this field still have a lot to offer M.E. patients. Some may also be quite willing to read and learn more about M.E.

 

Websites which may help you find a doctor specialising in orthomolecular / holistic / environmental medicine near you

Note that of course the quality of those practicing orthomolecular, holistic or environmental medicine varies widely, as does the principles and methods they employ in their practice. Many of them will not practice medicine as described in Symptom-based management vs. deep healing in M.E. and so it is recommended that you ring or email a doctor and ask some questions before committing to seeing them.

Please also be aware that while some may claim to specialise in 'CFS' very rarely if ever will they know even the basic facts of M.E., or understand that M.E. is not 'CFS.'

Websites from organisations:

Websites from individual doctors:

If you are interested in having vitamin C or the B vitamins by IV or IM, use the phone book or the internet to ask various qualified orthomolecular medicine practitioners near you if they offer this therapy and if they are experienced in providing it.

This is not a complete list. If you'd like to suggest a website that could be added to this list, please do so. The inclusion of a website in this list does not guarantee its quality. HFME takes no responsibility for any problems which may arise as a result of seeing any of the doctors listed here. Investigate any doctor before you see them and proceed with caution.

Make sure you arrive at your first appointment with a full written medical history and any a copy of any relevant test results you may have. It is also helpful to have read as much as you can about this type of treatment beforehand.

Educate yourself about the cutting-edge treatment options available so that you can partner with your doctor to secure yourself your best possible health outcome

It is important for you as a patient to read as much as you can about different types of treatments, nutrients, issues related to diet and gut health, and so on. Medicine works much better when there is a partnership between the doctor and patient with both having some input. The doctor cannot do everything for you, and a patient that relies on the doctor to do everything will not end up getting the best care.

For more information on treating M.E. please see the HFME e-book Treating M.E.: The Basics.

This a free 200 page + fully referenced resource created especially for M.E. patients using information from some of the world's leading orthomolecular medical experts, and others. It is divided up into many short sections which can be read one at a time and contains several overviews of various topics to help make comprehension easier for those suffering with M.E.

 

Quick diagnosis is key with M.E.

Patients quickly diagnosed and treated for M.E. have a much greater chance than other patients at regaining some or even all of their lives back. Correct diagnosis and treatment is extremely important in M.E., albeit one of the most difficult things to obtain within the current ignorant and corrupted medical system.

M.E. is a testable and scientifically measurable disease with a number of unique features. It is not difficult to diagnose medically even within just a few weeks of onset, using a series of objective tests.

For information on how M.E. is best treated in the early stages of the disease see the new paper: Treating M.E. in the early stages

  • For more information see: Testing for M.E. and The Nightingale Definition of Myalgic Encephalomyelitis by Dr Byron Hyde - the world's leading M.E. expert.
  • It is very important to be aware that merely qualifying for a diagnosis of 'CFS' or ME/CFS' is not at all the same thing as a genuine diagnosis of M.E. Vast numbers of patients qualify for these diagnoses that do not have M.E. and in fact if 'CFS' definitions are strictly adhered to, M.E. patients will not qualify for this misdiagnosis due to always having significant abnormalities on objective testing and on physical exam. For more information please see: What is M.E.?

 

Avoiding overexertion in the early stages of M.E. is absolutely ESSENTIAL

M.E. patients who are able to rest appropriately and avoid severe or repeated overexertion in the early stages of M.E. have repeatedly been shown to have the most positive long-term prognosis.

The importance of avoiding overexertion at this stage of M.E. just cannot be overstated. Resting in the early stages of M.E. or pushing through to remain active despite symptoms can be the difference between a normal life and very severe disability lasting decades or even death.

 

Calling all good doctors! Add your name to the future HFME international good doctor's list

This proposed new paper will list some of the good and the not-great-on-ME-facts but helpful-in-some-ways doctors out there.

Doctors can be specialists in vitamin IVs and very knowledgeable about how to nutritionally treat neurological and immune diseases generally, or even better, nutritional experts that are also doctors. Or they might just be good quality cardiologists, or neurologists, and so on. Doctors of all kinds that can see past the misinformation and are willing to treat patients based on their actual symptoms and pathology and to listen to the patient.

Do you have any names you think should be added to this international doctors for M.E. patients list? If you are a doctor, would you like to add your own name to our list? If you are a doctor that is currently using the 'Nightingale Definition of M.E.' to correctly test and diagnose patients with M.E. then we would love to hear from you in particular. If desired, your details and name can be made public on the site or kept private and only released to patients on a one-on-one basis by private email.

Finding a good doctor when you have M.E. - Part 2

Other problems faced by M.E. patients looking for correct diagnosis and treatment

Finding a good doctor is absolutely vital, and very much easier said than done for M.E. patients. The issue of correct diagnosis is incredibly difficult currently. M.E. is very easy to diagnose and to recognise and is quite distinct from various other diseases, and can reliably be tested for, but the problem is that most doctors do not have this information and have been fed an enormous amount of misinformation about M.E. and about 'CFS.'

Most often M.E. patients are told they have 'CFS' or 'CFIDS' or 'ME/CFS' - based on the various 'CFS' definitions - none of which is a useful or meaningful diagnosis. This is also often combined with inappropriate advice to exercise or to 'positive think' the way to health. Patients may be told that they will never recover and can't be treated or that they will recover fully within 5 years, neither of which is accurate as regards M.E.

Patients will also sometimes be misdiagnosed with depression when the inability to be active due to cardiac insufficiency etc. is confused with the very different problem of fatigue and apathy caused by a lack of motivation to be active. M.E. patients may also be misdiagnosed with an anxiety disorder if a doctor misinterprets the patient's problem of low blood pressure and other symptoms on standing or sitting (which may be managed by lots of fidgeting and changing of position) with mere anxiety symptoms. Doctors that make these misdiagnoses have clearly not listened even remotely to what their patients are telling them about their illness onset and their symptoms and are not conducting the appropriate tests as M.E. has very little in common with both of these conditions. (It is not a mistake that a conscientious and dedicated doctor could make.)

A big problem for many patients is being sent to different specialists who each claim that the illness resides entirely in their own speciality. (As the old saying goes, when one has a hammer, soon everything starts to look like a nail!) An M.E. patient may be sent to all allergist, and be told that once they take extreme steps to remove all allergens from their home environment, that full health will be restored.

When this doesn't happen, the allergist will usually either offer no explanation or apology at all, and stop seeing the patient or blame the patient for not following their advice carefully enough, or even 'choosing to be ill.' The same patient may then be sent to a rheumatologist, and be told that they have Fibromyalgia. Treatments completely inappropriate for M.E. may then be recommended such as exercise and antidepressants, and the patient may be told 'all patients with Fibromyalgia are able to work, if they can struggle on and toughen up a bit and aren't lazy, why can't you?' Of course it is hardly ethical or logical that patients with one disease have their severity and disability level compared to those with an entirely different disease, yet this is something M.E. patients face routinely unfortunately. It is very frustrating and in some cases amounts to serious medical abuse.

Patients with M.E. may also be sent to many different specialists, none of which knows anything at all about M.E., and be told that they have MS, POTS, NMH, Reynaud's, Fibromyalgia and so on. They may be given a dozen or more different diagnoses for what is actually just a classic case of M.E. This may not be so terrible in some cases, if at least the patient is treated well and given support appropriate for their level of disability. But it can cause huge problems where doctors try to treat each of these misdiagnosed diseases with the standard treatments, which will often be inappropriate for M.E. and cause the disease to worsen. (Just because M.E. and some of these other diseases share some symptoms, this does not mean that these symptoms have the same cause or response to treatment, or the same prognosis.)

 

What are some basic principles of orthomolecular / holistic / environmental medicine?

There are 3 basic principles:

1. Get the good stuff in. Give your body the fuel and tools it needs to work at an optimum level. Good food, nutrients and all the proper vitamins, minerals and antioxidants. Make sure you aren't deficient in anything important as the different nutrients all work together.

2. Get the bad stuff out. Make sure your body can detoxify out all the toxic substances and toxic by-products of bodily processes properly. Stop as many toxins from getting in in the first place, and do a detoxification program to get rid of the ones you have. Stop doing or eating the things which cause inflammation and have a pro-oxidant effect, and so on.

3. Reduce your body's total load. The total load concept is that lessening the body's overall burden/work and stress level in one area, will improve health generally and improve the body's ability to heal because the body's total load (or burden) is lessened. Fixing one problem frees up bodily resources that can be then be used to help other parts of the body function getter or to heal.

A good orthomolecular or nutritional expert will also help you:

  • Avoid toxins and anti-nutrients
  • Avoid anything you react badly to or are allergic to in your diet
  • Heal the gut (improve digestion, treat leaky gut and Candida if present)
  • Start a detoxification regime
  • Eliminate secondary infections and treat the primary infection, if present/still active
  • Educate you about how to eat well, with the ratio of protein, fat and carbohydrate that suits your body best
  • Boost the immune system
  • Boost antioxidant levels
  • Make sure you have the optimum amounts of the most important nutrients
  • Avoid causing further damage by excessive stress including oxidative stress (in M.E. this would include avoiding overexertion)
  • Try to heal or restore the function of other areas in the body which need attention, specific to each individual disease (in M.E. this may involve supporting good cardiac function, metabolic function, adrenal and thyroid function and repairing the myelin sheaths.)

Addressing all of these things takes a huge burden off the body. When body doesn't have to waste all its resources and energy slowly processing toxic waste, for example, it can use that energy to power up the very energy hungry immune system. This means getting fewer new infections and an increased likelihood of clearing long held ones. When the gut is healed food will be will digested better and so you'll start taking in more nutrients from the food you eat. No disease can he healed without first healing the gut. With all your body systems having a far lighter burden to carry plus all the nutrients they NEED, overall health is improved as is your body's ability to heal from serious disease.

The body needs to have the optimum amount of every essential nutrient. Ill people have higher requirements for nutrients than do healthy people. Every molecule of something toxic detoxified, leaves you with fewer molecules of an important nutrient, for example. The key to supporting the body's task of healing is not new and ever more exotic or specialised drugs or herbs, but a focus on all the nutrients we need to live and for our bodies to function optimally and to heal as much as is possible.

As Andrew Saul PhD explains,

Good nutrition and vitamins do not directly cure disease, the body does. You provide the raw materials and the inborn wisdom of your body makes the repairs. Someday healthcare without megavitamin therapy will be seen as we today see childbirth without sanitation or surgery without anaesthetic.

For more information on this topic the following papers are essential reading:

 

Serious problems to be aware of with many or even most of the natural therapists currently in practice

There are a lot of very poor quality therapists currently practicing in the field of natural medicine. For example, it seems these days that almost everyone who visits a naturopath will be told, no matter what their state of health, that they have a Candida problem! (And that they need to stop eating wheat and dairy products too.)

The amount of training and knowledge about diseases varies enormously from one naturopath to the next. While some do a lot of good, have thousands of positive case studies that would be the envy of a huge number of traditional doctors and have an enormous amount of scientific knowledge, others know very little and have almost no qualifications.

Unfortunately, not only do many naturopaths over-diagnose Candidiasis, it is also quite common for such individuals to tell a person with M.E. that they have a Candida problem causing all their symptoms and that once this infection is treated that they will be well and be able to resume their normal healthy life. All of the MANY symptoms and features of M.E. that don't fit Candidiasis (which is almost all of them) are ignored. Then, when this doesn't happen (because of course even if the patient does have Candidiasis, this is only a very, very small part of their serious health problems caused by M.E.) they blame the patient for not trying hard enough to get well or for not sticking to the program well enough.

These 'professionals' often fail to see that it is their own lack of skill and qualifications that has led them to misdiagnose and mistreat the patient and that they are actually behaving abusively, inappropriately and very unfairly and cruelly. If you are unlucky enough to encounter such a person, do not let their insults to your character affect you as they are all about THEIR ignorance and lack of professionalism and nothing to do with you at all. Do not continue to see them professionally and if you can, try to educate them politely about the reality of M.E. (in printed form) as you leave!

Natural medicine experts who perceive M.E. as a form of 'chronic fatigue' of a state of 'low energy' and treat you accordingly can cause significant harm (as the exercise or activity intolerance of M.E. is protective - and is of course NOT fatigue or tiredness - and artificially increasing activity levels with stimulants (or other means) can be extremely harmful and cause significant relapse in the short term, and may also have serious long-term consequences.).

As with a primary Candidiasis misdiagnosis, this ignorance of the facts of M.E. can also lead to vast overconfidence and overestimations by the practitioner in the effectiveness of treatments being recommended and the likelihood of recovery. Again, this can give the patient false hope which when (inevitably) lost, can be very hard to deal with emotionally and some practitioners may then compound this upset by then unfairly placing the entire blame for the lack of expected progress squarely on the patient.

Some of these concerns are also relevant to being treated by traditional medical doctors and specialists; any person treating you for this illness must know how to avoid causing you harm.

Generally speaking, naturopaths and similar professionals that are not also doctors are not equipped to diagnose patients correctly, but can sometimes be very useful for recommending treatments post-diagnosis.

Good and very good natural therapists do exist, but they are probably in the minority. Amongst the legitimate practitioners there are a lot of quacks out there who just want to take your money and will say anything they have to, to make you keep giving it to them. Many will be interested in treating symptoms, rather than finding and treating the actual causes of symptoms. One naturopath or nutritionist may be very different to another and it is up to you as a patient to check out a practitioners credentials and ask some questions before booking your first, and certainly your second, consult. If you don't feel confident in your practitioners training or abilities, find someone else more worthy of your time and money as soon as possible.

The recommendation of some orthomolecular / holistic / environmental experts in this paper is also in no way a blanket recommendation for all the different types of natural or nutritional therapists available. It is not a recommendation for crystal healing, past-like regression therapy or homeopathy, for example. It is very important to judge each type of natural medicine on its own merits and not to reject all of them together just because one area may lack scientific evidence or positive results.

What matters is the distinction between medicine that works and medicine that doesn't, not some artificial line between so-called mainstream or so-called alternative medicine.

For more information on this topic see: Symptom-based management vs. deep healing in M.E.

Disclaimer

HFME does not dispense medical advice or recommend treatment, and assumes no responsibility for treatments undertaken by visitors to the site. It is a resource providing information for education, research and advocacy only. Please consult your own health-care provider regarding any medical issues relating to the diagnosis or treatment of any medical condition.

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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:

"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
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