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.

Treating and living with M.E.

Treating and living with M.E. is a guide to some of the basics you need to know to live with, cope with and to treat M.E.

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.

Click on the links to download a copy of this text in the all-in-one 100 page 'HFME Tips' document in a printer-friendly Word format, PDF format or as a large-print PDF

To read more about the treatment of M.E. please visit the new Health, Healing & Hummingbirds website by Jodi Bassett.

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Treating and living with M.E.: Overview/introduction - Part 1

Copyright © Jodi Bassett March 2006. This version updated March 2011. 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 'CFS' or 'ME/CFS' (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' or 'ME/CFS.'

A diagnosis of CFS - based on any of the CFS definitions - can only ever be a misdiagnosis. Fitting any of these 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. 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.

While most M.E. patients will be misdiagnosed with 'CFS' this does not mean that M.E. is the same as 'CFS' as the vast majority of those given a 'CFS' diagnosis do not have M.E.

 

2…Avoid overexertion

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.


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 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.

 

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 in order to seek appropriate physical, financial and emotional support.

 

5…Try to find a knowledgeable doctor

This is absolutely vital, and very much easier said than done. 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.'

Finding doctors that can help with treatment is not so difficult however, which is very good news.

 

6…Modify your diet

Diet is so important in M.E. It has such a strong effect on the immune system, on hormones, on gut health and the level of neurological and cognitive problems and the body's ability to detoxify, and so on. The right diet can reduce cancer risk. Treating the gut problems of M.E. is also one of the first steps in treating M.E. itself and cannot be ignored. The health of the gut affects neurological health to a significant degree. Diet can also increase or reduce inflammation and have positive or negative effects on many different hormones and neurotransmitters. Food affects the body in the same powerful ways as do prescription drugs, and so must be considered with the same amount of respect. Food is not merely fuel, it is MEDICINE.

 

7…Modify and detoxify your environment

Chemical sensitivities are common in M.E. as are allergies or sensitivities to various airborne allergens. So modifying your environment and the products you use is essential.

 

8…Look into treatments for M.E. and improving your health

Intelligent nutritional 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.

 

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. usually do so due to an ignorance about the vast difference between M.E. and 'CFS.' Some treatment regimes are also outright scams that are aimed at many different patient groups and not just M.E. patients. It is important to be aware of some of the most commonly promoted scams so that false hope, financial loss and loss of health can be avoided.

 

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.

 

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.

 

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).

 

Conclusion

Living with and coping with M.E. is no easy feat. Hopefully every M.E. sufferer (and every parent of a child with M.E.) reading will have found something here that perhaps you were not aware of before, and that is helpful in some way. The very best of luck - and health - to you all.

For more information on each of these 12 topics, and links to all the major HFME papers on these topics, please see part 2 of this paper.

Additional notes and comments

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. See
    M.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.

 

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

Treating and living with M.E.: Overview/introduction - Part 2

Copyright © Jodi Bassett March 2006. This version updated October 2012. From www.hfme.org

 

1…Make sure you have been correctly diagnosed: More information

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.

Many with M.E. will 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.'

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.

 

2…Avoid overexertion: More information

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.

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.


3…Work towards learning to accept your illness: More information

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 for further information on this topic.

 

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

I. 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.

II. 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).

III. 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.

IV. 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).

V. 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.

VI. 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).

VII. 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.

 

5…Try to find a knowledgeable doctor: More information

For more information on this topic see: Finding a good doctor when you have M.E. and Testing for M.E.,

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.

 

6…Modify your diet: More information

For more information on this topic see the new Health, Healing & Hummingbirds website by Jodi Bassett.

 

7…Modify your environment: More information

It is important to use safer personal care and cleaning products and to drink filtered water. For more information on this topic see the new Health, Healing & Hummingbirds website by Jodi Bassett.

 

8…Look into treatments for M.E.: More information

For more information on this topic see the new Health, Healing & Hummingbirds website by Jodi Bassett.

The following HFME papers focus on different aspects of M.E. management:

 

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

For more information on this topic see:

 

10…Learn to avoid and minimise stress: More information

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 Coping with M.E. Emotionally for more information. 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.
  • If possible, having a pet cat (or fish or dog other animal) to keep you company can help with stress and the loneliness caused by the isolation that is so often an inescapable part of M.E.

 

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

See Practical hints for living with M.E. and The HFME reminders and cognitive tips list.

 

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

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 …and your illness level (unfortunately!).

To read a complete list of the articles and resources available on HFME suitable for different groups - severe M.E. patients, M.E. patients, patients misdiagnosed with 'CFS,' doctors, the media, friends and family of M.E. patients, carers and so on - see the Information Guides page.

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Exciting book news!

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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
Hardcover $22.95