(Or: ‘Help, I have M.E.- what on earth do I do now? Help!!!’)
Copyright © by Jodi Bassett, March 2006 on www.ahummingbirdsguide.com
This version updated March 2008

• Make sure you have been correctly diagnosed,
• Avoid overexertion,
• Work towards learning to accept your illness,
• Educate yourself (and those around you) about M.E. and seek appropriate support,
• Try to find a useful and knowledgeable doctor,
• Modify your diet,
• Modify your environment,
• Look into useful treatments for M.E.,
• Learn how to avoid inappropriate or harmful treatments and scams,
• Learn to avoid and minimise stress,
• Learn strategies to help with the cognitive symptoms of M.E., and
• Consider becoming involved in M.E. activism and advocacy.

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 MD explains:

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, 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 diagnosed with Fukuda CFS – merely by default. (See The Misdiagnosis of CFS for a more complete list.)

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. and author of the most accurate descriptions of the illness to date, plus the excellent descriptions created by the brilliant Dr Dowsett, Dr Richardson and Dr Byron Hyde M.D. including the new The Nightingale Definition of M.E. (A specific series of tests may also be necessary to help confirm the diagnosis.)

• 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?
• For information on how authentic M.E. is characterised and diagnosed see: Testing for Myalgic Encephalomyelitis, and What 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 Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome (an extract) 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?

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 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.

• 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 interventions.

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 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.

• 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).

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 M.E. sufferers will probably be initially) 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. 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. 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.)

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.

• 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 your luck with this list.)
• 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).

Most (if not all) M.E. sufferers will experience food allergies and/or food intolerances as part of the illness and so will have to avoid certain foods. A rotation diet may also be necessary for some sufferers (where particular foods are eaten only once in a 4 day period). Both food allergies and food intolerances may also fluctuate with the severity of the illness.

• See Verillo and Gellman's Treatment Guide and The Clinical and Scientific Basis of M.E by Byron Hyde M.D. for further information. In addition to avoiding chemicals which cause reactions, cigarettes and alcohol should also be avoided (alcohol may even cause disease progression in Mitochondrial diseases such as M.E.), as should becoming too cold or too hot. Note that in imperial measurement 1 litre = 0.22 gallons.

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 some of the types of products you buy to minimise your exposure to these things. Air and water filters may also be useful.

• 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.

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.

• See the ‘additional information’ section below for further information about different treatments for M.E.

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 excema 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.’)

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).

• 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

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.

• See Verillo and Gellman's Treatment Guide for further information (details of this book are given below) and Coping with M.E. Emotionally and also Sadness, Frustration, and Depression and Stress and Chronic Illness by Mary Schweitzer. 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. 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.)

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.

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. 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.

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 not true, but many patients are lucky enough to experience some level of improvement over time, and so there is reason for hope.

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.