The Hummingbirds' Foundation for M.E. (HFME)

Section 1 . Treating M.E.: The basics - Overview and introduction (on this page)

Section 2: Background information on the scientific validity and safety of nutritional, orthomolecular and herbal medicine (coming soon)

Section 3: Important notes on using the HFME's treatment information Please read this section before starting any new M.E. treatment regime

Section 3: A quick start guide to treating and improving M.E. with aggressive rest therapy, diet, toxic chemical avoidance, medications, supplements and vitamins

Section 4: Information on treating particular M.E. symptoms and issues

Section 5: Treatment cautions and warnings on treatments relevant to M.E. patients

Section 6: Treating M.E.: Food as medicine

Section 7: Additional papers on M.E. treatment

• The B vitamins and M.E.
• High-dose vitamin C and M.E.
• Vitamin D and M.E.
• Vitamin E and M.E.
• Magnesium and M.E.
• Calcium AEP and M.E.
• CoQ10 (ubiquinol), L carnitine, D ribose and M.E.
• Unrefined sea salt and M.E.
• Garlic and M.E.
• Iodine and M.E. (coming soon)
• Antioxidants, anti-virals, immune boosters and M.E. (coming soon)
• Detoxification and M.E. (coming soon)
• Candida and M.E.
• Increased intestinal permeability (Leaky gut) and M.E. (coming soon)
• Sadness, grief, depression, anxiety and M.E. (A nutritional approach)
• Meditation, relaxation, breathing exercises and M.E.

Section 8: Final comments, references, reliable sources of additional information, and acknowledgments

Treating M.E. - The Basics is a guide to some of the basics you need to know to live with, cope with and to treat M.E. It includes a detailed section on treatments, cautions about some treatments and information on how to avoid treatment scams.

A 4-page summary of this text is also available: Treating M.E.- The basics - Summary

There is far too much information here to take in in one sitting (especially if you are ill with M.E.), and so it is highly recommended that you save or print the full-length version of this paper so that you can take everything in more slowly and over a longer period of time.

See the Downloads section below to download this 100 page + paper in Word or PDF format.

Copyright © Jodi Bassett March 2006. This version updated October 2009. Taken from www.hfme.org

Myalgic Encephalomyelitis (M.E.) can be so overwhelming in so many different ways that it can be very hard to know how to even begin dealing with it. It can so quickly negatively affect almost every aspect of your life and become completely overwhelming in every way. Some ideas for where to start include to:

1…Make sure you have been correctly diagnosed

The fact that a person qualifies for a diagnosis of Oxford Chronic Fatigue Syndrome (CFS), Fukuda (CDC) CFS, or either of the Australian CFS definitions (a) does not mean that the person has Myalgic Encephalomyelitis (M.E.), and (b) does not mean that the person has any other distinct and specific illness named 'CFS.' A diagnosis of CFS - based on these or any of the other CFS definitions - can only ever be a misdiagnosis.

The reason for this is that despite the fact that the new name and definition of CFS were created in a response to an outbreak of what was unmistakably M.E., this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process which did not, and could not exist. As M.E. expert of more than twenty years Dr Byron Hyde explains,

Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis. It is not. The CDC 1988 definition of CFS describes a non-existing chimera based upon inexperienced individuals who lack any historical knowledge of this disease process. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance. Any disease process that has major criteria, of excluding all other disease processes, is simply not a disease at all; it doesn't exist. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears and the more problematic it becomes.

Today there are more than nine different CFS definitions. Just like the original Fukuda definition of CFS produced in 1988 however, none of these definitions defines any distinct illness. All they do 'define' is a heterogeneous population of sufferers from psychiatric and miscellaneous non psychiatric states which have little in common but the symptom of ' fatigue' (a symptom not associated with M.E. at all until the CDC become involved in 1988.) Thus whether or not you fit the Fukuda definition of CFS is entirely irrelevant in determining whether or not a person has M.E. (or any other illness). Fitting any of these 'CFS' criteria is meaningless and should never be accepted as an end point of the process of diagnosis.

The list of illness and conditions which are often misdiagnosed as 'CFS' is long and includes: depression, PTSD (and various other organic and non-organic mental illnesses), adrenal deficiency, various post-viral fatigue syndromes and other fatigue syndromes, systemic yeast infections (Candida), vitamin deficiencies, burnout or emotional exhaustion, chronic Epstein-Barr, post-glandular fever (or mononucleosis) fatigue syndromes, Fibromyalgia, athletes over-training syndrome, multiple sclerosis, Lupus, Lyme disease or Borrelia burgdorferi, multiple chemical sensitivity syndrome, gulf war illness and cancer. Many with M.E. will also be MISdiagnosed with Fukuda CFS - merely by default; the severe and disabling metabolic, neurological and cardiovascular abnormalities central to M.E. unfortunately mistaken for simple 'fatigue.' (See The Misdiagnosis of CFS for a more complete list.)

Patients 'diagnosed' with Fukuda CFS (or any other CFS definition) may have any one of these different illnesses and it is vitally important that each of these patients find out what their true diagnosis is so that they may finally receive appropriate treatment and support. (The good news for the misdiagnosed is that some of these illnesses are very treatable, far more so than M.E. - but only once they have been correctly diagnosed.)

The terminology is often used interchangeably, incorrectly and confusingly. However, the DEFINITIONS of M.E. and 'CFS' and 'chronic fatigue' are very different and distinct, and it is the definitions of each of these terms that is of primary importance:

a. People with chronic fatigue may be tired because of cancer, Multiple Sclerosis, vitamin deficiency, a sleep disorder, depression or a large number of other reasons. Fatigue or chronic fatigue is a symptom of many illnesses. Up to 20% of the population may currently suffer from some form of chronic fatigue.

b. Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion (or wastebasket diagnosis) based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as 'CFS' is 'medically unexplained.' A diagnosis of 'CFS' does not mean that a person has any distinct disease (including M.E.). The patient population diagnosed with 'CFS' is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a 'CFS' (mis)diagnosis. Every diagnosis of 'CFS' can only ever be a misdiagnosis.

c. Myalgic Encephalomyelitis is a systemic neurological disease initiated by a viral infection. M.E. is characterised by (scientifically measurable) damage to the brain, and particularly to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis. Substantial evidence indicates that M.E. is caused by an enterovirus. The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct.
M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or sometimes fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares similarities with MS, Lupus and Polio. There are more than 60 different neurological, cognitive, cardiac, metabolic, immunological, and other M.E. symptoms. Fatigue is not a defining nor even essential symptom of M.E. People with M.E. would give anything to be only severely 'fatigued' instead of having M.E. Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.

A correct M.E. diagnosis can only be determined by looking at legitimate descriptions and definitions of the illness such as the descriptions of the late Dr Melvin Ramsay; a doctor with over 30 years experience with M.E., plus the excellent descriptions created by the brilliant Dr Dowsett, Dr Richardson and most especially Dr Byron Hyde the world's leading M.E. expert, including Dr Hyde's newNightingale Definition of M.E. A specific series of objective scientific tests can also help confirm the diagnosis, and should be fully utilized if at all possible.

Every patient deserves the best possible opportunity for appropriate treatment for their illness, and for recovery. This process must begin with a correct diagnosis if at all possible; a correct diagnosis is half the battle won.

• For more information on what a CFS diagnosis means, and a list of many of the illnesses most commonly misdiagnosed as CFS see: The misdiagnosis of CFS.
• For more information on the financial and political issues surrounding the creation of 'CFS' and the bogus psychological paradigm of CFS see:What is ME? And Who benefits from 'CFS' and 'ME/CFS'?,
• For information on how authentic M.E. is characterised and diagnosed see:Testing for Myalgic Encephalomyelitis, andWhat is Myalgic Encephalomyelitis? See also: The Nightingale Definition of M.E by Dr Byron Hyde - this paper is essential reading for anyone with an interest in M.E. as are the other Dr Hyde papers:A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of CFS and The Complexities of Diagnosis
• For more information on why the disease category of CFS must be abandoned, including the use of confusing and misleading terms such as 'ME/CFS', 'CFS/ME' and others, see: Why 'CFS' must be abandoned and What is ME?
• If you have been misdiagnosed with 'CFS' and you aren't at all sure that you have M.E. or you know for sure you don't have M.E., then don't despair, see the new must-read paper: Where to after a 'CFS' (mis)diagnosis?
• Note that the information given in this paper is appropriate only for patients with genuine neurological Myalgic Encephalomyelitis. For more information see the 'What is M.E.?' summary reprinted below.

2…Avoid overexertion

M.E. is primarily neurological, but because the brain controls all vital bodily functions virtually every bodily system can be affected by M.E. Again, although M.E. is primarily neurological it is also known that the vascular and cardiac dysfunctions seen in M.E. are also the cause of many of the symptoms and much of the disability associated with M.E. - and that the well-documented mitochondrial abnormalities present in M.E. significantly contribute to both of these pathologies. There is also multi-system involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine organs in M.E. Thus Myalgic Encephalomyelitis symptoms are manifested by virtually all bodily systems including: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage.

M.E. is an infectious neurological disease and represents a major attack on the central nervous system (CNS) - and an associated injury of the immune system - by the chronic effects of a viral infection. There is also transient and/or permanent damage to many other organs and bodily systems (and so on) in M.E. M.E. affects the body systemically. Even minor levels of physical and cognitive activity, sensory input and orthostatic stress beyond a M.E. patient's individual post-illness limits causes a worsening of the severity of the illness (and of symptoms) which can persist for days, weeks or many months or longer. In addition to the risk of relapse, repeated or severe overexertion can also cause permanent damage (eg. to the heart), disease progression and/or death in M.E.

Upon becoming ill with M.E. patients can achieve only 50% (or less) of their pre-illness activity levels. It is vital that patients stay strictly within these limits, in order to prevent further bodily damage. The single biggest factor determining recovery and remission from Myalgic Encephalomyelitis at this point (aside from dumb luck) is undoubtedly appropriate rest and the avoidance of overexertion in the early and/or severe stages of the illness. If you have M.E. you must give yourself the best possible chance for recovery and REST appropriately. The importance of this cannot be overestimated. It is vital that M.E. patients avoid physical over-exertion and are never encouraged to exercise (or be active) beyond their individual limits particularly in the early and acute stages of the illness, but also at any stage of the illness. There is nothing to be gained by people with M.E. pushing themselves beyond their individual physical limits as this can only result in unnecessary relapses and increased (or extreme) pain and suffering and so be counterproductive. Permanent damage (eg. to the heart) and disease progression may also be caused and there have also been reports of sudden deaths in M.E. patients following exercise (or after a long period of sustained overexertion).

Exercise or exertion intolerance is one of the many characteristics that separates M.E. so distinctly from a variety of 'post-viral fatigue states' or other primarily 'fatiguing' illnesses. M.E. should never be diagnosed without this feature being present. In addition to physical activity, relapse and symptom exacerbation in M.E. are also caused by cognitive exertion, sensory input and orthostatic stress, beyond the patient's individual post-M.E. limits.

Note that 'fatigue' and feeling 'tired all the time' are not at all the same thing as the very specific type of paralytic muscle weakness which is characteristic of M.E. (and is caused by mitochondrial dysfunction) and which affects every organ and cell in the body; including the brain and the heart. This causes - or significantly contributes to - such problems in M.E. as; cardiac insufficiency (a type of heart failure), orthostatic intolerance (inability to maintain an upright posture), blackouts, reduced circulating blood volume (and pooling of the blood in the extremities), seizures (and other neurological phenomena), memory loss, problems chewing/swallowing, episodes of partial or total paralysis, muscle spasms/twitching, extreme pain, problems with digestion, vision disturbances, breathing difficulties, and so on. These problems are exacerbated by even trivial levels of physical and cognitive activity, sensory input and orthostatic stress beyond a patient's individual limits. People with M.E. are made very ill and disabled by this problem with their cells; it affects virtually every bodily system and has also lead to death in some cases. Many patients are housebound and bedbound and often are so ill that they feel they are about to die. People with genuine Myalgic Encephalomyelitis would give anything to instead only be severely 'fatigued' or tired all the time.

Fatigue or post-exertional fatigue (or malaise) may occur in many different illnesses such as various post-viral fatigue states or syndromes, Fibromyalgia, Lyme disease, and many others - but what is happening with M.E. patients is an entirely different (and unique) problem of a much greater magnitude.

Several studies supposedly show that graded exercise therapy (GET) is a useful treatment for 'CFS' but the reality is that such studies have selected patients solely on the presence of 'chronic fatigue.' Thus these studies are only relevant to chronic fatigue patients and not to those with M.E. (Those conducting the studies have also been found to have vested financial interests in the outcomes, unsurprisingly.) Some of the patients with primary fatigue or with a variety of different illnesses misdiagnosed as CFS may improve with exercise (or CBT; cognitive behavioural therapy) but this is irrelevant in determining appropriate treatments for M.E. patients as these patient groups are entirely unrelated. If a patient improves with exercise, that patient simply does not have M.E.

Dr Paul Cheney explained about M.E. patients that:

If patients draw down their lifestyle to live within the means of the reduced cardiac output, then progression into congestive cardiac failure (CCF) is slowed down, but if things continue to progress, a point will be reached where there is no adequate cardiac output, and dyspnoea will develop, with ankle oedema and other signs of congestive cardiac failure. In order to stay relatively stable, it is essential for the [M.E.] patient not to create metabolic demand that the low cardiac output cannot match.

As M.E. expert Dr Melvin Ramsay summarises, 'The degree of physical incapacity varies greatly, but the [level of severity] is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.' Patients must determine for themselves a level of activity that is not needlessly restrictive, but which stops unnecessary relapses and disease progression - and which also leaves the body with enough resources to try to heal and to restore a higher level of health and ability.

• See Treating M.E.: Avoiding Overexertion,The effects of CBT and GET on patients with Myalgic Encephalomyelitis and The ultra-comprehensive M.E. symptom list for more information on the importance of avoiding overexertion.
• The CBT and GET database is a comprehensive guide to the use of CBT and GET on patients with Myalgic Encephalomyelitis. It contains excerpts and links to literally hundreds of articles and research studies which expose the lack of scientific legitimacy (and the hidden financial/political motivations) underlying the 'behavioural' paradigm of M.E. and the use of these inappropriate and extremely harmful or fatal interventions.
• Note that while Cheney unfortunately and unscientifically uses term such as 'CFS' and CFIDS' he is referring primarily to patients with M.E. (Although he does unfortunately also mix in some 'CFS' propaganda, see the: Dr. Paul Cheney page.) For information on adrenaline surges in M.E., and the different order in which certain bodily systems may be affected by M.E. (and by overexertion), see the Dr Cheney section inThe effects of CBT and GET on patients with Myalgic Encephalomyelitis or Treating Myalgic Encephalomyelitis - Avoiding Overexertion.

3…Work towards learning to accept your illness

Starting to accept that you have a serious illness is a difficult but important process that can take anywhere from months to years. Accepting illness does not mean happily resigning yourself to your fate and to being severely ill for the rest of your life, but is about acknowledging the realty of your illness; acknowledging that it isn't something that is going to just conveniently disappear if you ignore it for long enough or think positively enough and/or that there is no quick fix or 'miracle cure' available and that it is something you will have to deal with and adjust to - at least for now.

As discussed in the previous section, continually denying or ignoring your illness and pushing through the symptoms and limitations (until you completely collapse) can only be counterproductive, or even dangerous. Acceptance of the limitations of the illness at as early a stage as possible is crucial to long-term outcome and will also save you many unnecessary and potentially very severe (or even semi-permanent or permanent) relapses and a lot of pain and suffering in the short and the long term.

See Coping with M.E. emotionally and Verillo and Gellman's Treatment Guide for further information on this topic (details of this book are given below).

4…Educate yourself (and those around you) about M.E. and seek appropriate support

Along with coping with the physical effects of the illness it is also important that you educate yourself about the illness as much as you are able and seek appropriate physical, financial and emotional support. You'll need to do thing such as:

• Educate yourself as much as you can medically and politically about M.E. This will help you in many ways; it will help you avoid inappropriate and bogus treatments, make you more knowledgeable about legitimate treatments and make you better able to defend yourself if you are faced with ignorant claims about the illness - and so much more. Knowledge is power! This self education is invaluable for every M.E. sufferer.
• Educate those around you so that they will know better than to believe the baseless propaganda surrounding the illness and be more likely to give you the physical and emotional support you need (and perhaps be willing to stand up for you and your rights, if the occasion ever demands it).
• Find out what financial support is available and what the requirements are to qualify for it if you are severely affected enough to need to do so (as most if not all M.E. sufferers will be) and make your application. (None of us ever thought we would be forced to have to rely on welfare, but M.E. gives most of us no choice in this and so there is no shame in doing what you must do to live.) Delaying this unduly may lead to serious financial vulnerability as claims may not go through as quickly as we need them to, and so the sooner you apply the better.
• Find out about other services in your area that might be appropriate or that you might need; meals on wheels, house-cleaning services for the disabled, housebound library services, or which local shops will home deliver, and so on. If an advocate service is available near you (and you are severely affected enough to need one) this would also be well worth looking into (an advocate is someone who will advocate on your behalf to make sure that you receive adequate medical and other care).
• It is also important that you do your best to support yourself emotionally. For your own emotional wellbeing, it is important to stop accepting the blame for getting ill in the first place (or for remaining ill) if ignorant friends, family or doctors have been filling your head with this sort of bunkum (or trying to). It is just nonsense. Nobody causes themselves to get M.E. through anything that they did such as; overwork, 'stress,' a perfectionist (or type 'A') personality, not 'eating right' or childhood abuse or trauma or anything else. M.E. is not a form of burnout and even with the most positive attitude in the world you CANNOT will yourself well from M.E. It just doesn't work like that unfortunately. (If it did almost none of us would still be ill.) Try hard not to let stupid and ignorant comments get to you, you have more than enough to cope with just dealing with the REALITIES of M.E. let alone having to deal with things people have just made up about the illness or things they say to you purely out of ignorance.
• One of the best ways to maintain your emotional health is to join a M.E. support group either online or one which meets in person. It helps so much to know that there are so many people who are going through the same thing as you are and that you aren't alone. You might have to hunt around a bit to find a group that you really like and that suits you but when you do it will likely be well worth it. (Finding groups which match your own severity level is particularly important.) Hopefully you will make yourself some new friends who will help you cope with every stage of your illness, and who you will support in turn (which can also be rewarding at times).
• If you have tried your hardest to educate particular friends or family members about the truth about the illness but they continue to make nasty or belittling comments or to blame you for your illness (or even to withhold physical or other types of support that you need), you may have to disassociate yourself from them for the time being (if this is possible). It is important to always remember that these sorts of nasty and thoughtless comments say much more about them than about you; happy and well-adjusted people do not repeatedly heap abuse or scorn on people who happen to become very physically ill through no fault of their own. There really are no excuses for this, nobody deserves such poor treatment but especially not someone already dealing with something as horrific as M.E. If you can possibly avoid such people, you should avoid such people - for as long as they continue to act this way.
  
  
• See What is M.E.? and The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List for further information. The paper 'A Million Stories Untold' is also recommended for use in explaining M.E. to your friends and family, along with So you know someone with M.E.? See also the new paper: M.E. vs MS: Similarities and differences. For general information for carers and hospital staff or family members on how to appropriately care for someone with M.E. see the new paper: Hospital or carer notes for M.E. .
• See also: Support Groups and Coping with M.E. Emotionally. (More information is also given below on social security entitlements.)

5…Try to find a knowledgeable doctor

Of course this is absolutely vital, and very much easier said than done. Perhaps the best way to find a reputable doctor who is knowledgeable about the illness (aside from just trying your luck with as many different doctors as you can find) is to ask fellow sufferers in your area who they would recommend. Some M.E. charities may also be able to help with recommendations (although the quality of the doctors recommended here of course may be far more variable, or even abysmal).

A knowledgeable doctor will make sure you have been correctly diagnosed, monitor your condition for any treatable and/or other concerning abnormalities, provide symptomatic (and other) treatments, monitor new symptoms to ensure you have not developed a secondary illness and much more.

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. It may also be helpful to write a detailed medical history before your first visit, and indeed to make written notes about what you would like to discuss before every consult as an aid to (or a replacement for) memory.

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. Despite the existence of the tests for M.E. described in Testing for M.E., 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. See 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.

• See Verillo and Gellman's Treatment Guide for further information (details of this book are given below).
• If you are desperate for a doctor recommendation and have no other options, you might like to check out Co-cure's good doctor list. (Note that this list says it recommends good doctors for 'ME/CFS' and 'FM' patients and so many of these doctors - or none of them - may actually be knowledgeable about genuine M.E. but if you have run out of other options, you might want to try this list.) See also: Hospital or carer notes for M.E.
• You may also need glasses and a good optometrist post-M.E. as M.E. can seriously affect vision in many different ways (as explained in Dr Hyde's M.E. textbook pages 702, 48-51 and 700-701).

6…Modify your diet

Diet is so important in dealing with M.E. that this topic is now discussed in a separate new paper. Please see: Treating M.E. - Food as medicine or download the Word/PDF version of this paper, which also includes a copy of this new paper on diet.

7…Modify your environment

Chemical sensitivities are common in M.E. as are allergies or sensitivities to various airborne allergens. You may need to modify your environment or to change the types of products you buy to minimise your exposure to these things. HEPA air and water filters are also a good idea, if you can afford them.

Chemical sensitivities may occur to indoor and outdoor chemical air contaminants; perfumes, hairspray (and a wide variety of other personal care products), gasoline, household cleaning products, plastic and glue out-gassing. This can produce allergic reactions, although not all chemical sensitivities are IgE mediated. There can also be a worsening of existing allergies and/or new severe sensitivities or allergies to airborne allergens such as: pollen, mould, animal dander, fur and feathers or dust.

People with M.E. should particularly be careful to avoid the chlorine and fluoride in water. Drinking chlorinated water kills the good bacteria in the gut and may also increase your cancer risk. Products such as the Rainshower Dechlorination Crystal Bath Ball filter can be useful for reducing the chlorine in your bathwater. It is also important to avoid personal care products containing sodium laureth sulphate (SLS), or sodium lauryl ether sulfate (SLES) or perfumes or parabens. Every personal care product; every shampoo, deodorant, hair dye, moisturiser, cleanser and toothpaste we use is absorbed through the skin and so are all the products we use to clean our dishes and cutlery and to clean our clothes and sheets. You also take in harsh cleaning products etc. by inhaling the fumes. Even if there is no immediate effect on you, these products are best avoided by M.E. patients (and everyone else!) for a number of reasons, not least of which is that they are often carcinogenic. Instead buy some of the safer, more eco friendly 'natural' non-toxic alternatives which are now widely available, reasonably priced and just as effective as more traditional toxic products. They are often far better quality products and much nicer to use, and smell better too. (Or you could make some of your own cleaning products using vinegar and bi-carb soda and so on.)

You might want to purchase a machine that measures EMF (or ELF) radiation, so that you can be aware of and limit your exposure, as there is some evidence (although it is not yet conclusive) that high levels of this type of radiation can contribute to neurodegeneration in M.E. and also potentially increase cancer risk You can read more about EMF in this article on stopping neurodegeneration. As a general rule; keep at least an arms length away from major electrical appliances such as ovens and televisions and half an arms length away from smaller appliances such as alarm clocks and lights - for as much of the day as is possible. (The good news is that it is fairly easy to greatly reduce your exposure with just a few changes to how you arrange your appliances etc.)

You may also need to other changes to your environment such as: moving your bedroom to the ground level of your house so you don't have to use the stairs (or moving to a house which does not have stairs or which has a stair-lift) or modifying your house (or bedroom) so it lets in less light or noise. You may also benefit from the use of; modified cutlery or other utensils, a cane, a wheelchair or a motorised scooter, a leg raising cushion to raise your legs when lying down to reduce the load on the heart, medical quality knee high or thigh high compression stockings to stop the blood pooling in the legs (and reduce the load on the heart), a shower chair, a computer set-up which lets you use the computer lying down, for example alaptop stand (if you have M.E. you must ALWAYS lie down to use the computer!), noise blocking headphones - and much more. Using these tools or making these changes is not 'giving in' to being ill, these are things which will make your life better and will let you do MORE things than you otherwise might - which has to be a good thing!

• See Verillo and Gellman's Treatment Guide for further information (details of this book is given below) and Practical hints for living with M.E. You may also like to browse through your local disability equipment store (or chemist) for items which may make your life easier or look at what is available through online shopping by doing an internet search.
• Noise cancelling headphones are now much cheaper than they used to be.

8…Look into treatments for M.E.

Whilst there is no cure as yet, or treatments which can dramatically influence the natural course of the illness (due to the appalling lack of funding for legitimate research); intelligent nutritional, pharmaceutical and other interventions can make a significant difference to a patient's life. Appropriate biomedical diagnostic testing should also be done as a matter of course (and repeated regularly) to ensure that the aspects of the illness which are able to be treated can be diagnosed, treated and then monitored as appropriate. Testing is also important so that potentially dangerous abnormalities (which may place the patient at significant risk) are not overlooked.

• M.E. is an illness known for its variability from each hour, day, week or month to the next. It is an illness where natural spontaneous remissions and relapsing of both the general severity of the illness and of particular symptoms are common. ('Spontaneous' means that these changes are natural, and not the result of treatment.) This means that when trying any new treatment it is important to:
• Try only one new thing at a time
• Take the treatment it until it works (set a reasonable time limit for this to occur and cease treatment past this point if you notice no benefit), then stop treatment for at least 6 - 8 weeks to see if the effect disappears, then start taking the medication again and monitor the effect. This may need to be done several times. You'll be surprised just how often many medications you initially were sure were helping do not pass this test. If a treatment does pass, you know that you are definitely not wasting your precious money on it.
• Never spend more than you can afford on treatments in the hopes that this will be 'the one' or because amazing claims have been made about it by the people selling it or through testimonials by other sufferers. There is no 'one' for M.E. as yet unfortunately. Claims to the contrary are false.

As M.E. sufferers can be sensitive to a wide variety of medications, it is also important that you start with very small doses (1/10th of a normal dose or even less) of any drug when you first start taking it to minimise any negative reactions; this is particularly important with drugs which act on the central nervous system (CNS) as M.E. sufferers are particularly sensitive to the effects of such drugs.

Both pharmaceutical drugs and alternative or complementary therapies can be useful in treating M.E.; there is no need to take an either/or approach as the ideal treatment plan will encompass the best of both. It is important to be aware however that 'natural' treatments may cause adverse reactions or side effects every bit as severe as those caused by prescription drugs. 'Natural' does not necessarily mean safe - if there were no risk of negative effects there would be no chance of positive effects either.

If you are seeking treatment from a naturopath, acupuncturist, Chinese medicine practitioner or any other complementary practitioner however, it is important to ensure that they have a real understanding of what M.E. is before you begin treatment. Alternative therapists 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.). 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. This can give the patient false hope which when (inevitably) lost, can be very hard to deal with emotionally. Some practitioners may then compound this upset by then unfairly placing the entire blame for the lack of expected progress squarely on the patient. Find out as much as you can about the practitioners level of knowledge of M.E. before you let them treat you. It is also important to assess their overall credibility, competency and level of training; 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 give it to them.

Some of these concerns are also relevant to being treated by qualified traditional medical doctors and specialists; any person treating you for this illness must know what this illness actually is to be able to be useful in any way -and most importantly - to know how to avoid causing you harm. Remember too that your doctor should always be aware of every medication, vitamin or herb you are taking to monitor for adverse effects and to prevent dangerous reactions between certain medications. (In a perfect world your doctor will be quite knowledgeable about such treatments and will be the one prescribing them to you in the first place.)

(Note however that while various alternative practitioners may be useful in treating certain symptoms, they should not be relied upon for your initial diagnosis. These practitioners are not qualified to diagnose illness; they have not had the appropriate training and also do not have access to the necessary medical tests. Serious illness may be easily missed by such practitioners and misdiagnosis is also extremely common.)

See the 'additional information' section below for further information about different treatments for M.E.

9…Learn how to avoid inappropriate or harmful treatments and scams

Those proffering inappropriate, dangerous or fraudulent treatments or who make false or misleading claims about the efficiency of some treatments for M.E. generally fall into a few basic categories:

• Outright scams set up by unscrupulous people who just want to make a quick buck off the sick and desperate
• A group of psychiatrists and other doctors (and others) with vested political and financial interests (and their misguided followers) who claim that M.E. and 'chronic fatigue' are exactly the same thing and that both are merely 'aberrant belief systems' which will respond to treatments such as antidepressants, graded exercise therapy and cognitive behavioural therapy. The more than a thousand medical studies which completely and utterly disprove this 'flat earth' type theory are simply conveniently ignored and pretended not to exist by such vested interest groups. Every study which does supposedly support these theories and therapies has selected patients purely on the presence of fatigue and so these studies are studies on fatigued people and so irrelevant to M.E. patients (as 'fatigued people' are an entirely different and unrelated patient group.) No study has ever shown these treatments to be useful in treating M.E. patients and indeed there is an abundance of evidence which has shown that these therapies are useless or even extremely harmful or dangerous for M.E. sufferers.
• Misguided sufferers of various fatiguing illnesses who have been misdiagnosed with 'CFS' but who, because they treated or cured their own illness now think they can help people who have M.E. (which is, unbeknownst to them, an entirely unrelated illness with an entirely different aetiology, response to treatment and prognosis)
• Misguided doctors (or other medical practitioners) who have treated or cured people with a variety of illnesses misdiagnosed as 'CFS' and who now think they can help people who have M.E. (which is, again, unbeknownst to them, an entirely unrelated illness with an entirely different aetiology, response to treatment and prognosis)
• Misguided M.E. sufferers who were lucky enough to experience a natural spontaneous remission from their illness (or from a particular symptom) but who incorrectly credit whatever they happened to be taking at the time with their improvement and so present a treatment which may be useless or have some modest benefits as instead being able to give other sufferers the same substantial (or enormous) improvement that they experienced.

There are so many different types of bogus treatment claims and scams, but some of the most common things to try to avoid (and which should set your internal alarm bells ringing!) include:

• Be wary of any treatment which makes amazing claims about improvements or recovery - if it looks too good to be true, then it almost definitely is (If M.E. was really this easy to treat nobody would still have M.E. and there would certainly not be any severely affected sufferers left).
• Be wary of treatments which claim to be able to cure or improve everything from arthritis to eczema to irritable bowel syndrome to ADHD to 'CFS' ('cure alls' usually cure nothing).
• Avoid treatments such as antidepressants, cognitive behavioural therapy and graded exercise or any other treatment based on the inaccurate and unscientifically supported premise that you can 'think or exercise yourself well' with M.E. (This is particularly important with regard to exercise programs: a recent survey of a large group of M.E. sufferers found that exercise therapies such as graded exercise therapy (GET) were the single most harmful treatment for M.E. bar none)
• Anything which claims there is an easy and sure fire cure or treatment for M.E., or that they and only they have unlocked the simple truth behind the illness, or anything similar, is to be avoided at all costs. (If someone has come up with an easy answer to M.E., what this really means is that they didn't actually understand the question, and they've come up with a simple but WRONG answer! M.E. is not the same as 'CFS' or fatigue or chronic fatigue or a post-viral fatigue syndrome or Candida or anything else.)
• Don't be swayed by glowing testimonials; anyone could have written these (and probably did) and you have no way of knowing if a testimonial which says it is by a M.E. or CFS sufferer is actually written by someone who has the same illness as you do. These people may instead have any number of more easily treatable fatigue based illnesses (or they may actually have M.E. but also had a natural remission when they took the product which led them to falsely believe the product was more useful than it actually is.)
• Be very suspicious when anything is very expensive
• Be wary of claims based on dubious sounding science. (A common ruse is to make claims that the product works and is different from others because of the 'ratio' of ingredients for example; 'normal calcium and magnesium supplements wont give you the same effect, but my product will because it is in the exact ratio found in the body and thus my product is the only one which will be properly absorbed.')

Some of these treatments may do nothing, some may be harmful and some may have a modest beneficial effect which doesn't match up to the amazing claims made about the product, or justify how much you were persuaded to spend on the product. The biggest 'cost' from being taken in by misleading claims about treatments is not usually the financial cost however, but the emotional one; the high emotional price of false hope. Getting your hopes up that you have found the answer and that things will soon be so much better for you and then having your hopes completely shattered when the treatment doesn't live up to the claims made about it can be truly devastating.

The best recommendations for treatments will come from: respected M.E. experts, reputable books on M.E., legitimate research, your own doctor (if your doctor is knowledgeable about M.E.) and perhaps also from fellow M.E. sufferers.

When taking advice from fellow sufferers however, there are a few things you need to be wary of:

• Never rely on the credibility of advice from a sufferer you don't know well. You have no idea if they have been correctly diagnosed with M.E., no idea if they have tested the treatment for efficacy (by stopping and starting taking it and monitoring the effects) and no idea if months from now (unbeknownst to you) their remission will end and they will be forced to admit that the treatment didn't really work and that it was in fact a natural remission that caused their improvement; and not the treatment they so strongly and convincingly recommended to you.
• Advice on symptomatic treatment or relief is usually far more reliable and useful than treatment suggestions for things which will supposedly greatly affect the general illness severity level (due to the propensity in M.E. for natural remissions and improvements in the general severity level of the illness).
• If a friend recommends something to you (particularly a treatment which is meant to improve the whole illness rather than just to minimise certain symptoms), and you know they have M.E. and it really does seem as if this treatment is legitimately helping in some way it can be helpful to write down the treatment and then to ask them again in 3 or 4 months time if they are still experiencing the same improvement (as often this will not be the case).
• Never rely on treatment recommendations which came from your friend's brothers neighbours second cousin twice removed (or similar) who supposedly had 'just what you have' and who 'recovered completely' and is now 'back working full time' because of treatment x. Such ridiculous stories should always be treated with the contempt they deserve by all of us. There is a very strong possibility these people never had M.E. …but there is an even stronger possibility that they never existed at all! (The treatments recommended are always the most mundane things too, well known over the counter products, or simple diets etc. as if people as desperately ill with M.E. and the doctors who have devoted decades of their lives to treating M.E. patients wouldn't have tried all the simple things first! Again, if it was that simple nobody would still have M.E., and certainly not severe M.E. (If something really worked, the M.E. world is very well connected and very EXTREMELY motivated to get better, and we would all KNOW very very quickly. That is a fact you can count on).

Make sure you also research the safety and established use in M.E. of any new treatment as much as you can before you try it (do an internet search, look it up in a M.E. textbook or two etc.). You must also always ask your doctor their opinion about how suitable the treatment may be for you and if it is safe or appropriate for you.

• See Verillo and Gellman's Treatment Guide for further information (details of this book is given below) and Practical hints for living with M.E. To read more about the political and financial motivations behind the scientifically unsupportable 'belief system' theories of the illness see:What is M.E.? Smoke and Mirrors and Putting research and articles into context

 

10…Learn to avoid and minimise stress

Stress unequivocally does not cause M.E. (and can not EVER cause M.E.) but as with most illnesses, stress can exacerbate the symptoms of the illness. Unfortunately, stressful situations also become harder to handle when you have M.E. and so it is important to avoid as many stressful situations, tasks and people as possible. The stress you can't avoid you'll need to learn to minimise as best you can. If you are able to meditate (some sufferers lose this ability or simply cannot listen to anything) this also may help considerably with stress reduction. Talking about what is bothering you to friends, family or to other M.E. sufferers in your support group may also help. Some sufferers also pour out (or vent) their feelings into private journals; whatever works best for you.

The most intense source of 'stress' in a M.E. sufferers life is the M.E. itself (of course) and it is completely normal to feel sad, mad, angry, irritable and frustrated sometimes because of your illness. (Indeed it would be abnormal if you did not feel these things sometimes). It is also normal and necessary for you to spend time grieving for what you have lost through the illness sometimes too; to feel sorry for yourself somewhat, and to cry as much as you need to. At other times however, you will need to try to find ways to take your mind off thinking about yourself, to try to distract yourself from such thoughts.

As with comparable neurological illness such as multiple sclerosis or Parkinson's, along with the primary symptoms of the illness some sufferers of M.E. will also experience a smaller number of organic emotional or psychological symptoms. Possible symptoms include; emotional lability (mood swings), irritability, anxiety or panic attacks, emotional flattening or a degree of lack of inhibition. The damage to the parts of the brain which control emotion are of an identical nature to those that affect physical function; these emotional symptoms are an organic part of the illness caused by the same anatomical and physiological damage to the brain as sleep disorders, seizures or any other neurological problems or symptoms are.

Exacerbations of emotional symptoms in M.E. also tend to be linked to exacerbations in physical symptoms, there are most often not environmental triggers. The degree of severity of these symptoms varies considerably from patient to patient; some will have significant problems, others will have mild or only occasional problems and some will be unaffected. Like any other part of the illness, it is up to you (and your doctor) to try to minimise the effects of these symptoms as best you can.

If any of these emotional symptoms becomes a real problem for you however, or appears to be worsening (particularly feelings of depression, grief or sadness) and you feel you might benefit from outside help; it is important to find someone who is knowledgeable about M.E. to advise and treat you for these problems for this to be helpful. Psychologists or counsellors who see your emotional symptoms as your primary illness (rather than as a reaction to - or symptoms of - an organic and systemic serious neurological illness) and as the chief cause of your physical disabilities will be of little help and indeed (as you can imagine) could make things even worse for you emotionally. It will also pay to shop around until you find someone who you think is a good match for you; don't expect to necessarily like the first person you see and don't let a few bad experiences put you off if this is something you truly need. Hopefully your perseverance will pay off in the longer term.

• See Verillo and Gellman's Treatment Guide for further information (details of this book are given below) and Coping with M.E. Emotionally. For a list of online support groups see: Support Groups.
• You might also like to buy (or borrow free from the library), different books on stress reduction and meditation; some are better than others so keep looking until you find one you like. The most severely affected will be too ill to meditate, but if you are up to it, it can really help; not the symptoms of the disease, but help you think more clearly and feel calmer and happier.
• See The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List for more about the symptoms of M.E., and stress quotes for more about stress and M.E. (and why stress can never cause anyone to have M.E.)
• Remember too that eating lots of sugar or high GL/GI foods can have a significant effect on mood and can leave you with erratic emotional highs and lows and irritability as you go into or come down off a sugar high. (M.E. means very often we tolerate sugar very poorly compared to pre-illness). You may be surprised how much more calm and in control and happy (and not at all moody!) you feel on a healthier/more appropriate diet.

11…Learn strategies to help with the cognitive symptoms of M.E.

The cognitive symptoms of M.E. can often be some the most severe and disabling of the entire illness, and so also some of the most concerning. These include problems with memory, problems with thinking and making decisions, difficulty learning new tasks and much more. Various treatments may improve these effects to some extent but modifying the way you do things can also really help, doing things such as:

• Writing lists of things you have to get done that week or that day. This might mean keeping one small notebook you write everything in, or it might mean a notebook in each room, a well-organised calendar with a white board near it and several different lists and charts (for different things) on your computer! Whatever you find you need.
• In addition to writing notes about everyday tasks etc. you might also like to keep separate lists or charts on paper or on your computer for; friends birthdays, any medications you are taking (including the dose, date started, the cost, where and who you bought it from), your consults with your doctor (write down as much as you can when you get home, before you forget it) and anything else you think might be useful.
• With your doctors permission, bring a voice recorder to your doctors appointments if you feel like this is necessary for you to be able to remember what was said. (This may also be useful for university lectures etc.)
• If you haven't done so already, set up phone or internet banking and automatic bill paying where available.
• Keeping things in the same place each time saves time wasted always looking for the same things you've lost.
• Keep your medication in a pill box with the days of the week on it so you will know whether or not you have taken your medication each day.
• Removing distractions such as noise or TV on in the background may help you think more clearly or complete a task more easily (or have a conversation more easily).
• Watching less TV and/or reading less and/or less time on the computer etc. may help increase your cognitive abilities for the rest of the day (you may have to choose between quality and quantity of brain-power).
• Save difficult tasks until the time of day when you are at your best mentally.

See Practical hints for living with M.E. and also The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List for more about the symptoms of M.E., and how to live with them.

12…Consider becoming involved in M.E. activism and advocacy

Unfortunately, while many M.E. advocacy groups started out doing excellent work to improve things for M.E. sufferers, today this is no longer true in many (or even most) cases and so the need is great for individual M.E. sufferers to participate in M.E. activism and advocacy. (Most groups are actively working AGAINST our interests and against science and ethical concerns.) Aside from the gains to the M.E. community in the longer term however, this sort of activity can also greatly benefit the participant individually. It can provide a real sense of purpose, achievement and of pride. It is also a healthy and positive way to channel your anger and frustration at how poorly M.E. sufferers are treated (or how badly you have been treated).

Start small by just educating yourself and then those around you about the facts about M.E.; friends, family and fellow sufferers. That might be enough for you (and everyone doing just that would really help), or you might then like to look at writing letters of complaint to politicians, or to the media or to your local M.E. group; tell them what needs to change, what the real facts are and how important this is. Where you go from there is limited only by your imagination …well that and of course, your illness level (unfortunately!).

• See M.E. Activism and Advocacy for more information on this topic (and for information on why many or even most M.E. groups are now some of the worst sources of information on M.E. available and how and why many are unbelievably now working directly against the best interests of M.E. sufferers). See also: Activism Articles,What is M.E.?Why the disease category of 'CFS' must be abandoned,Smoke and Mirrors and Research and Articles in Context.
• See also Problems with 'our' M.E. (or CFS, CFIDS or ME/CFS) advocacy groups which is available in text form and also as an animated video.
• See also: 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' and Problems with the use of 'ME/CFS'

Conclusion

Living with and coping with M.E. is no easy feat and so of course it is impossible to cover everything you could need to know in so few pages but hopefully every M.E. sufferer (and every parent of a child with M.E.) reading this will find something in the HFME's treatment pages that perhaps they were not aware of before, and that is helpful in some way. The very best of luck - and health - to you all.

Sections include:

• What is the prognosis for M.E.?
• Can I or should I still donate blood if I have M.E.?
• Are there other tests that I can have done privately that can help with determining the best treatments?
• Am I at a greater risk of contracting cancer because I have M.E.?
• What if I only have a tiny bit of money to spend on treatment, or almost none?
• Some additional notes on applying for benefits/welfare/disability support

What is the prognosis for ME?

Myalgic Encephalomyelitis has many different and unpredictable outcomes. The illness can generally be; progressive or degenerative, chronic (and relatively stable), or relapsing and remitting. In some cases M.E. may also be fatal. Unfortunately the myth that 'everyone recovers eventually' is just not true for M.E. patients, but many patients are lucky enough to experience some level of improvement over time, and so there is reason for hope. (Everyone will recover eventually from various post-viral fatigue syndromes, but M.E. is an entirely different and unrelated disease to PVF syndromes with different symptoms, onset, pathology and prognosis.)

Full spontaneous recoveries, where the person is restored to normal functioning are thought to occur in up to 6% of patients (although experts warn that these are remissions rather than true recoveries and that relapse is unfortunately a future possibility for these patients). A significant number of patients will experience partial spontaneous remissions; where functioning improves markedly but there is still a mild to moderate level of disability present. ('Spontaneous' means that these improvements were natural, and not the result of treatment.) Around 25 - 30% or more of cases are progressive, degenerative or extremely severe. (The best way to look at this is that most cases are NOT progressive, degenerative or extremely severe…and even if you are severely affected, improvement IS possible for you in the future; particularly if you can strictly avoid overexertion. Dr Dowsett says that stabilization is possible at any stage of the disease so long as there is appropriate rest and treatment).

For what it is worth, every single person I've spoken to about it, that has been lucky enough to have recovered 70% or more of their pre-illness function was diagnosed early, treated appropriately and able to rest adequately in the early stages of the illness. With the right care and rest, M.E. does not have to be progressive, and significant recovery can happen and does happen. Even if you didn't get the rest you needed in the early stages, rest and proper care in later stages, consistently, can still let you recover to some degree. It may not be 70%, but even 30% or 40% ability levels are nothing to sneeze at when you have been so severely ill.

The most severely affected sufferers too are almost always those who were the most active (either through ignorance or by force) in the earliest stages of their illness, and thereafter (myself included). Avoiding overexertion is almost EVERYTHING when you are looking at getting your best possible prognosis with M.E. This can't be stressed enough.

The fact that we are limited in how active we can be with M.E., is a protective mechanism that stops us from causing further - and even more permanent and severe - bodily damage. M.E. is NOT FATIGUE and should never be treated medically in the same way as 'fatigue.'

If you are able to, it is a good idea to monitor and keep records of your symptoms and the severity of your illness over time. Remember that it is not safe to assume that all new symptoms will be M.E. as unfortunately having M.E. does not make you immune from developing other illnesses.

• A note on 'dual' diagnoses in M.E.: Despite the fact that severe pain is a well known and very common symptom of M.E. many M.E. sufferers who have pain are told that they now also supposedly have 'Fibromyalgia.' But if pain is a recognised symptom of M.E. then how does an additional Fibromyalgia diagnosis made purely on the presence of pain make sense? Patients who have Fibromyalgia and patients with primary M.E. can be easily distinguished from each other with various tests (and other means), so what do tests show in patients who supposedly have both?
  Interestingly, when patients have both illnesses the test results given are the ones for M.E. only. So do these M.E. patients really also have Fibromyalgia, or do they just have severe pain as part of their M.E.? As you might expect, these test results strongly suggest the latter.
  The same is true of multiple chemical sensitivity syndrome (MCSS); symptoms of chemical sensitivity are part of the core symptoms of M.E. and have long been associated with M.E.(as well as with several other autoimmune illnesses such as multiple sclerosis and Lupus) and so there is no need for an additional diagnosis of MCSS to be made. Just because you may fit a definition of Fibromyalgia, or MCSS, or irritable bowel syndrome (IBS) this does not mean that your symptoms are caused by the same aetiological or pathological process, or will respond to various treatments the same way, or will have the same prognosis as those people who have primary Fibromyalgia, MCSS or IBS, or anything else. SeeM.E. and other illnesses and The misdiagnosis of CFS for more information.
• See Myalgic Encephalomyelitis: The Medical Facts for more on the prognosis of M.E. and the 3 Part Myalgic Encephalomyelitis Ability and Severity Scale: a tool for monitoring the course of your illness over time.

 

Can I or should I still donate blood if I have M.E.?

In some countries M.E. is not specifically listed as an exclusionary illness which prevents you from legally donating blood while in other countries M.E. sufferers are specifically banned. If you have M.E. (or even suspect you have M.E.) however you should not donate blood whatever the law states because of the possibility of infectious agents being passed on through your blood. This is a real possibility.

 

Are there other tests that I can have done privately that can help with determining the best treatments?

A number of tests are available privately (ie. not covered by health funds or government etc.) that can help you and your doctor learn more about how best to treat your illness and how it has affected your body, and just as importantly; which treatments to avoid.

Note that these tests are not at all useful for the diagnosis of M.E. and abnormalities in these tests are seen in many different illnesses. They are to help with determining treatment only.

While many of these tests can be organised without the aid of a doctor, you really do need the help of a qualified doctor to help interpret the results of these tests, if at all possible. Some tests can be done entirely by post, while others unfortunately require visits to blood drawing centres etc.

Tests which may be useful include (note that this is not a complete list of tests, and that I cannot guarantee the quality of any of the companies which provide these tests whether listed here or not):

• Hair mineral analysis (including testing for heavy metals such as mercury).
• IgG food allergy tests test for around 100 different IgG food allergies, by ELISA blood test. Tests must be quantitative; they must tell you not just that you have a certain allergy, but how severe it is also. (The IgG/IgE test offered by US company VRP is around half the price of the one offered by York Labs in the UK.) There is also the ALCAT - Food Allergy & Chemical Sensitivity/Intolerance Test.
• SpectraCell blood tests can identify missing vitamins and minerals for targeted nutritional replacement.
• Comprehensive Detoxification Profile: This test analyses saliva, blood, and urine after challenge doses of caffeine, aspirin, and acetaminophen, to assess Phase I and Phase II functional capacity of the liver to convert and clear toxic substances from the body. This profile includes markers for oxidative stress and important antioxidants.
• Standard Detoxification Profile: This test analyses saliva and urine after challenge doses of caffeine, aspirin, and acetaminophen, to assess Phase I and Phase II functional capacity of the liver to convert and clear toxic substances from the body.
• DetoxiGenomic Profile: This test evaluates SNPs associated with increased risk of impaired detoxification capacity especially when exposed to environmental toxins. It also identifies individuals potentially susceptible to adverse drug reactions.
• HEMEX blood clotting tests and Homocysteine blood tests ( link 2)
• Comprehensive digestive stool analysis , Urinary organic acids test and Urine toxic metals test.
• Oxidative Stress Analysis, Blood & Urine: This test identifies markers of hydroxyl radical activity, urine lipid peroxides, reduced glutathione, superoxide dismutase, and glutathione peroxidase, following a challenge dose of aspirin and acetaminophen.
• There is also a Blood type test, Intracellular red cell magnesium testing, AA/EPA ratio tests,urine or saliva pH test strips (also available fromVRP and iHerb. VRP also offer comprehensive hormone panel testing including cortisol, environmental allergy and organic acid urine testing, and C-Reactive protein testing).
• You might also want to look into genomic testing for methylation problems and how appropriate the Yasko protocol might be for you. Although as this test is so extremely expensive, some suggest trying the protocol and just seeing if it works for you. It includes a stone age diet, a good multi-vitamin and mineral supplement with no copper or iron in it, essential fatty acids, vitamins C and D, D-ribose, CoQ10 , Acetyl L-Carnitine, NAD, Phosphatidyl serine complex, probiotics, and help for methylation with 2 - 5mg of B12 daily as cyanocobalamin andhydroxocobalamin and 200 - 800mg folic acid as methyltetrahydrofolate although M.E. patients in particular need to start at much, much lower doses and may only ever be able to tolerate far lower doses than this as we have significantly more problems and more severe illness than many other patients that this protocol is specifically designed for. (Note that Dr Cheney has recently said that Methyl B12, Folapro and D-Ribose as recommended by Dr Yasko, are not appropriate for M.E. patients and will make them sicker. He has also said that while there is a methylation block in M.E. patients, this is protective in M.E. and so trying to treat it may be counterproductive.) Methylation problems are just one of many in M.E. This also means that we are unlikely to experience the same miraculous results as those on the protocol that do have primarily methylation related illnesses (which may be misdiagnosed as 'CFS'). M.E. is far more complex than this unfortunately.

Places to source tests include: Genova (formerly 'Great Smokies Labs'), Life Extension foundation (US patients only and only those who can get to blood drawing centres), VRP, York Labs and Holistic Heal. The last three companies listed let you do some or even all of their tests using postal kits that can be sent all over the world. All you do is a simple finger prick blood test with the materials provided, and then send it off for testing. Just make sure you follow the instructions carefully, and post the sample so that it arrives within the specified time frame.

• Tests of immune function may be useful in letting you know how well an immune system supporting treatment is working, these include tests of: NK cell levels and NK cell cytoxicity, T lymphocytes and circulating cytokines. These are tests that are available only through your doctor.
• The Cell-free DNA in blood plasma test measures cell degeneration. Low levels are found in healthy people, and increases are associated with serious disease (eg. M.E., cancer, stroke, etc.). Cell degeneration is one measure of how ill you are, but most/all people with M.E. will have increased cell degeneration, so it's not clear whether this test is necessary. Similarly, C-Reactive Protein tests measure the total amount of inflammation within the body. This will likely be high in M.E., but also in many different diseases.
• Mitochondrial test are not included on this list as every M.E. patient has significant mitochondrial abnormalities and would benefit from taking some type of mitochondrial support supplements. (It is also true that patients with many different diseases misdiagnosed as 'CFS' will have some level of mitochondrial abnormalities - as Dr Myhill's work shows - and so positive tests for mitochondrial abnormalities cannot be used to prove a M.E. diagnosis. Dr Myhill unfortunately (and bizarrely, considering her extensive exposure to legitimate research and genuine M.E. patients) makes little if any distinction between various unrelated 'fatigue' patients misdiagnosed as 'CFS' and genuine M.E. patients - to the detriment of both patient groups.)

 

Am I at a greater risk of contracting cancer because I have M.E.?

Sadly, there is some evidence to suggest that this is the case. BUT it is good to know about this possible increased susceptibility to cancer, so that we know how important it is to do what we can to protect ourselves beforehand. That means avoiding known carcinogens such as air pollution, cigarettes and alcohol, high levels of EMF radiation, deep-fried or burnt food and chemicals in food (eg. nitrates) and personal care products (eg. SLS and some hair dyes), etc., investigating and taking substances which may have anti-cancer properties such as antioxidants (vitamins A, C and E, selenium, zinc and mixed natural carotenoids) and avoiding overexertion (as this increases free radicals).

Problems with methylation, left untreated, may also increase cancer risk. The Good Health in the 21st Century book explains that decreased glucose tolerance alone increases risk factors for some cancers.

In essence, the things that reduce your cancer risk are also the same things that are involved in treating M.E. in the best way possible anyway.

• For more information see the short article: Th1 and Th2, cancer and M.E.
• If you already have cancer (and M.E.), see: Say No to Cancer and Alternative Medicine: The Definitive Guide to Cancer and The Natural Way to Heal: 65 Ways to Create Superior Health . Books such as The NEW optimum nutrition bible and to a lesser extent (the focus here is more on doing what you can to avoid cancer in the first place) Dr Atkins Vita-Nutrient Solution: Nature's Answer to Drugs each have useful chapters on how to potentially improve your outcome with diet and supplements and are at least well worth a read also (although you should ignore 100% of anything they have to say about treating 'CFS' as this will be irrelevant or inappropriate with regards to M.E.). If you cannot afford to buy these books, please email me for other suggestions.

 

What if I only have a tiny bit of money to spend on treatment, or almost none?

So many of us are living in real poverty, and it is hard to see how this will change while we have so few genuine advocacy groups and while so much so-called 'activism' is supportive of the very same propaganda causing and perpetuating the abuse and neglect.

If you only have a few dollars spare a week to spend, probably your best bet would be to buy a good multivitamin and mineral supplement that contains decent amounts of vitamin A, the B vitamins, vitamin C, D and E, as well as zinc, selenium, molybdenum, mixed natural carotenoids and so on. The best I have found so far is Life Extension two-a-day multivitamin and mineral supplement. It costs 22c (USD) a day and so $1.63 a week, and contains far greater amounts of most vitamins and minerals than most other products, and is cheaper than many other brands while still being produced by a good quality company. (The only downside is that is contains the standard type of folate, but then so do 99% of multivitamins).

If you had $15 a week to spend, perhaps you could also add 1000mcg B12 as hydroxycobalamin (91c), 200mcg folate as L-5-methyl tetrahydrofolate (50c), 1.8g of EPA/DHA from fish oil ($3.30), 50mg CoQ10 as ubiquinol ($2.80), 400 IU natural vitamin E (49c), a daily probiotic capsule ($2.50), 100mg Silymarin (98c), 1000mg vitamin C powder with bioflavonoids (35c) and 1000mg Hawthorn ($1.80). If you had a bit more money you could add a few more things, and if you had less money to spend you'd have to take off a few things (obviously). If you only have a small amount to spend, it is of course more important than ever to try to make sure you are getting the 'most bang for your buck' so make sure you take only one new supplement at a time and see what really works best for you.

You can save a lot of money on supplements by buying high dosage capsules or tablets and then splitting them or grinding them, and by buying supplements in powder form and either making your own capsules or drinking them in water or in a protein shake*. Supplements widely available in powder form include: the B vitamins, vitamin C, Carnitine and Acetyl L Carnitine, Lecithin, various amino acids, prebiotics (FOS), Chlorella, Calcium and Magnesium. You can save sometimes up to 50 - 75% off the usual price by buying pure powders, you also avoid synthetic fillers. Try buying powders from Life Extension, VRP, iHerb (or from www.purebulk.com as recommended to me by a fellow M.E. patient recently).

If there are gaps in your supplement regime it is also more important than ever that you try to fill them with your diet. Make everything you eat work for you and avoid empty calories and spending 'wasted money' on foods that don't give you much real nutrition. Instead of drinking normal black tea, drink green tea, or ginger tea, or ginkgo tea. Instead of eating sugar-filled (or chemical filled) flavoured yogurt, eat a piece of fresh fruit. Instead of adding sugar to your tea, add Manuka honey. Instead of a flavoured cream cheese dip with crackers, buy or make a bean dip, avocado dip or salmon dip and eat it with fresh vegetable crudités. Instead of corn flakes or sultana bran (or other heavily processed sugary cereal) eat organic steel cut oats as porridge or muesli. Instead of reconstituted low quality meat in the form of sausages, chicken nuggets, fish fingers, or pre-prepared chicken schnitzel, eat fresh or tinned salmon or fresh lightly cooked lean beef or chicken. Instead of mashed potato, have a bowl of spinach with pine nuts, or a vegetable stir fry. Instead of rice cakes or crackers, or corn cakes, eat some fresh unroasted nuts and seeds. You get the idea!

Buying the cheapest brands can be a false economy when the supplement industry isn't well regulated. It is best to stick to quality brands as much as possible otherwise you might save a bit of money but end up having supplements which don't contain anywhere near the amount of active ingredients as stated on the bottle. (I tend to buy almost all of my supplements from Life extension foundation, VRP, Jarrow, Source naturals and Metagenics, although of course there are other good quality brands out there.) Look for brands which make a point of advertising the quality of their products and say that they are tested for potency, and that give you more than just the bare minimum amount of information about the supplement (and how it has been produced). Buying better quality brands doesn't necessarily mean more expense, often you find that the good quality brands are very competitively priced or even much cheaper than some other brands.

Multivitamin and mineral supplements are such good value, if you have a very limited budget you might consider taking 3 a day instead of the recommended 2, etc. Just make sure that there isn't too much of one ingredient to make this safe, and that you also take into account all your other supplements.

If your pension goes up by 10$ a week, or you quit smoking and save 20$ a week, or something else happens to save you a small amount of money each week, pretend that you don't have that extra money (if you were managing on that previous amount) and have it automatically taken out of your usual account each week and put into a fee free savings account, for use in case of emergency.

 

Some additional notes on applying for benefits/welfare/disability support

The rules and procedures for applying for and qualifying for social security payments due to illness vary considerably in each country and so a comprehensive analysis of all of them is another (very difficult) whole essay in itself. There are a few things that might be useful in many cases however, and these include:

• Always keep photocopies of everything you send in for your own records (and in case they lose anything).
• Having test results which show abnormalities can only help your claim so get appropriate testing done if at all possible. (This will also help you to help confirm your diagnosis if any doubt remained). See Testing for M.E. for details.
• If the doctor who is helping you with your claim is a GP, it might be useful to ask this doctor to give you a referral to a specialist (one who is at least somewhat educated about M.E.) as this may carry far more weight. (Illogically, this will likely be true even if your GP is very knowledgeable about M.E. and has been treating you for years and if the specialist knows very little about M.E. and has only seen you for a few minutes!)
• Keeping a daily activity log for a week or so may also be useful in making it very clear to everyone involved your exact level of disability and exactly how your illness affects your daily life.
• When you fill in all the various forms which ask you to explain your level of disability and what you can and can't do, remember that you should NEVER fill them in as if they were asking you about what you can do on your 'best possible day.' For example, if you are asked if you can leave the house and you say that yes you can, it will very likely be assumed that this is something that you can do easily, and even daily - without any real issues. This will cause very serious problems for you if the facts are that yes you can leave the house; but only about once a month or so, and only when you can have complete rest for a week beforehand and if even then you'll also spend another two weeks collapsed and very ill from the outing afterwards. You get the idea. These types of forms typically do not allow for or understand the variability of M.E. (or any other illness) and so to avoid misunderstandings and dangerous (and utterly disastrous) overestimations by the relevant agency about your physical and other abilities, you must always fill in forms as if they were asking about what you can RELIABLY do; What are you able to do every day? What can you still always do even on your worst days? How much or what are you able to do each day without this activity worsening the severity of your condition over time?
  
• See Dealing with a flawed Social Security Disability system: Guilty until proven innocent (in the US) and the Australian: ACOSS Ten Myths & Facts about the Disability Pension

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