Where to after a 'CFS' (mis)diagnosis? Every diagnosis of 'CFS' is a misdiagnosis, so where does that leave you and what should you do if a 'CFS' diagnosis is the only diagnosis you have?

This paper is designed not for people with M.E., but for everyone who doesn't have M.E. but has been given a misdiagnosis of 'CFS' based on any of the 'CFS' definitions and so been denied appropriate diagnosis and treatment for their illness.

This paper is divided into two sections:

• Where to after a 'CFS' (mis)diagnosis?
• Additional question and answer session on the text

See the Downloads section below to download either of these sections in Word or PDF format.

This paper is designed to be read together with The misdiagnosis of CFS

Copyright © by Jodi Bassett December 2007 on www.ahummingbirdsguide.com

The paper The misdiagnosis of CFS explained why 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 patient has Myalgic Encephalomyelitis (M.E.), and (b) does not mean that the patient has any other distinct and specific illness named ‘CFS.’ In other words, why a diagnosis of CFS – based on these or any of the other CFS definitions – can only ever be a misdiagnosis.

It is far easier said than done, but what your number one priority needs to be is getting a correct diagnosis. Every patient deserves the best possible opportunity for appropriate treatment for their illness, and for improved quality of life or recovery – including YOU – and this process must begin with a correct diagnosis if at all possible.

A correct diagnosis is half the battle won.

Before you can get a new diagnosis, you must first be willing to let go of your 'CFS’ misdiagnosis. This is easy for some, but understandably somewhat harder for others who have become deeply involved in the CFS community (perhaps even for many years or decades) or who have had to fight or work very hard for a long time just to get a CFS (mis)diagnosis. It might even feel better (or less scary) to cling to this wrong diagnosis, than to have no diagnosis at all for a period of time.

The bogus disease category of ‘CFS’ is made up of people with all sorts of different and unrelated conditions, both psychological and non- psychological, that have been unscientifically lumped together due to the vague and inclusive ‘CFS’ diagnostic criteria. 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 (Hooper et al. 2001, [Online]) (Dowsett n.d.a, [Online]) (Hyde 2007, [Online]). As Dr Byron Hyde MD explains:

This is why being diagnosed with any of the definitions of CFS is not a meaningful or useful diagnosis and why a diagnosis of CFS should never be accepted – by doctor or by patient – as an end point of the process of diagnosis.

Each of the patient groups involved must be correctly diagnosed and then treated as appropriate based on legitimate and unbiased science involving the SAME patient group. People with M.E. must be diagnosed with M.E. and treated for M.E. Patients with depression must be diagnosed with depression and treated for depression. Patients with Fibromyalgia must be diagnosed with and treated for Fibromyalgia. Patients with cancer should be treated for cancer, and so on. Lumping these disparate patient groups together under a vague and meaningless category of ‘fatiguing illnesses’ or ‘CFS’ only hinders each of the patient groups involved in their battle to regain their health (Dowsett 2001b. [Online]) (Hooper 2006, [Online]) (Hyde 2003, [Online]).

Some of the illnesses commonly misdiagnosed as ‘CFS’ (or even as CFS/ME, ME/CFS, CFIDS or M.E. depending on the physician) include:

• Various post-viral fatigue states/post-viral fatigue syndromes (eg. following glandular fever/mononucleosis, hepatitis, Q fever, flu, measles, chickenpox, herpes and many other infections)
• Fibromyalgia
• Candida
• Athlete over-training syndrome
• ‘Burnout’
• Multiple chemical sensitivity syndrome (MCSS)
• Multiple Sclerosis
• Thyroid illness
• Adrenal insufficiency
• Localised and metastatic malignancies
• Brain tumours, including astrocytomas and gliomas
• Transverse Myelitis
• Myopathic illnesses including: myasthenia gravis, mitochondrial myopathies, post-infectious polymyositis
• Vitamin B12 deficiency disorders: pernicious anaemia, intentional dietary deprivation, intestinal disease
• Rheumatoid illness or lupus (SLE)
• Sarcoma
• Renal or liver disease
• Infectious illnesses including: Toxoplasmosis, AIDS, Lyme disease (Borrelia burgdorferi), Tuberculosis and Brucellosis
• Various psychiatric and social psychiatric states including: anxiety neurosis, uncomplicated endogenous or reactive depression, clinical depression, psychopathic personality disorder, post-traumatic stress disorder (PTSD), Schizophrenia and other psychiatric disease (Ramsay 1986, [Online]) (Hyde 1992, p 22) (Dowsett n.d.a, [Online]) (Hooper et al. 2001, [Online]) (Hyde 2003, [Online]) (Hyde 2006, [Online])

This is of course not a comprehensive list. It should also be remembered that although none of the CFS definitions define M.E., the majority of M.E. patients will unfortunately be given a CFS misdiagnosis by default (due to the ignorance surrounding M.E., and the confusion between M.E. and ‘CFS’). Therefore the possibility that a patient misdiagnosed with CFS has authentic Myalgic Encephalomyelitis should also be investigated, along with these myriad other possibilities. (See Testing for Myalgic Encephalomyelitis for more information).

Learning that you don't actually have CFS (because there is no such disease/s as ‘CFS’) is good and bad news. It's good because you might be about to finally get a correct diagnosis, and the correct treatment AND the enormous (or at least significant) improvement in your condition which comes with that or you might even be about to get a CURE for your illness. These are all real possibilities.

People with a ‘CFS’ diagnosis are NOT just mistakenly treated as if they had a psychological illness however; that is not what is happening here. It is far worse than that. They’re treated as if they were deviants, as if they were beneath contempt and not worthy of even basic respect or consideration or medical care, or even any level of kindness or compassion. People with a ‘CFS’ misdiagnosis are often persecuted and vilified, discriminated against and lied about… and their physical suffering is very often ridiculed, trivialised and made fun of… like no other patient group I’m aware of. The level of abuse ands neglect is sometimes so high that it has actually resulted in a number of deaths. (This high level of potentially life-destroying or fatal abuse seems to be on the increase; see What is M.E.?  for more information.)

It is not in the best interest of any of us to stay in this ‘CFS’ nightmare voluntarily, which is exactly what so many of us are doing. Any diagnosis, so long as it is accurate, is far better than keeping a ‘CFS’ misdiagnosis. Mental illnesses are just illnesses like any other. What is important is that we get a correct diagnosis and the appropriate treatment, whatever that may be.)

Without trying to scare you unnecessarily, some of you will have very serious and life-threatening conditions causing your illness. Many serious illnesses, including various cancers, cause significant fatigue and are commonly misdiagnosed as ‘CFS.’ Every month you delay getting diagnosed and treated could really make an enormous difference to your long term health, or even to your survival. How quickly you reject your CFS misdiagnosis could literally be a matter of life and death for you. People have actually DIED because they had cancer and got no treatment for it because they were absolutely certain that they had a classic case of ‘CFS’ for example. Such misdiagnoses are not uncommon. This is not scaremongering; it’s a fact, unfortunately.

The only groups which gain from the ‘CFS’ confusion – the ‘CFS’ insurance scam – are insurance companies and various other organisations and corporations which have a vested financial interest in how these patients are treated, including the government.

People with Myalgic Encephalomyelitis have a real fight on their hands to have the name and historically and scientifically correct definition of M.E. renewed – and to have M.E. separated once and for all from the bogus disease category of ‘CFS.’

But everyone who has been misdiagnosed as CFS who doesn't have M.E. is also harmed just as much by the man-made ‘CFS’ disease category.

The only logical way forward for every patient group involved is that the fictional disease category of ‘CFS’ must be abandoned. We all need to work together to stop this ‘CFS’ scam continuing any longer (Hooper 2006, [Online]). These vested interest groups have made ENOUGH extra millions of dollars for themselves at our expense.

Every diagnosis of ‘CFS’ – based on any of the CFS definitions – is a misdiagnosis. Everyone misdiagnosed with ‘CFS’ must stand up and refuse this wastebasket diagnosis starting now.

This isn't just about politics, or semantics, or terminology. It isn’t about who is sicker or more important than anyone else, or about one patient group trying to sneakily gain advantages for itself at the cost of another. It is about big business manipulating science and REALITY to suit their own vested political and financial interests with a blatant disregard for ethical concerns or the violation of basic human rights; no matter what the enormous cost to some of our most ill and vulnerable members of society. It is about preventing needless suffering, abuse, neglect and countless needless deaths of hundreds of thousands of children and adults with M.E. and all those millions of people misdiagnosed with ‘CFS’ who have other illnesses. Needless suffering and death is needless suffering and death. We need to work together to stop this happening for the benefit of all of us. Nobody is going to do it for us, unfortunately.

If you think that there really is something seriously wrong with you physically, you are very probably right. Trust your instincts. Don't take ‘I don't know’ or ‘I don’t know but I think you maybe have CFS’ or ‘there is nothing wrong with you’ for an answer. Keep pushing and pushing until you get the answers you need. If you come up against a brick wall; get a second opinion, or a third, or a fourth – or as many as it takes until you find a doctor that understands and practices the age-old medical principals of correct diagnosis: (a) taking a full and careful history, (b) detailed physical examination and (c) appropriate investigation and testing (Hyde 2006, [Online]). You need and deserve a correct diagnosis and appropriate medical care and a chance at improved health just as much as anyone else.

Again, a correct diagnosis is half the battle won.

·         The paper The misdiagnosis of CFS is essential additional reading. For details on the symptoms listed in the most commonly used CFS definitions, and how these compare to the symptoms of many of the illnesses commonly misdiagnosed as CFS (as listed above), see part 2 of The misdiagnosis of CFS.

·         For some hints and tips on getting a correct diagnosis, see the Questions and Answers section (below).

·         For more information on why the bogus disease category of ‘CFS’ must be abandoned, including the use of confusing and misleading umbrella terms such as ‘CFIDS’ ‘ME/CFS’ ‘CFS/ME’ and others, see: Why the disease category of ‘CFS’ must be abandoned, Smoke and Mirrors and What is Myalgic Encephalomyelitis?

·         Also highly recommended are the excellent papers by Dr Byron Hyde M.D., a doctor with over 20 years experience with M.E. see: 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 and The Complexities of Diagnosis (which mentions several case studies of people who died from cancer and other illnesses because of a ‘CFS’ misdiagnosis) and Dr Hyde’s M.E. textbook.

·         There are a number of post-viral fatigue states or syndromes which may follow common infections such as mononucleosis/glandular fever, hepatitis, Q fever, Ross river virus and so on; but M.E. is an entirely different condition to these self-limiting fatigue syndromes. People suffering with any of these post-viral fatigue syndromes do not have M.E. Myalgic Encephalomyelitis is not the correct term for these illnesses, any more than is ‘CFS’ (or any other combination/variation of these terms). For more information see: What is Myalgic Encephalomyelitis?

·         None of the CFS definitions is a description of any distinct disease, including Myalgic Encephalomyelitis. M.E. is not defined by fatigue and is not merely a diagnosis of exclusion or ‘medically unexplained.’ M.E. can be extremely severe and disabling and in some cases the disease is fatal. M.E. is an acute onset organic neurological disease which also causes significant cardiac and cardiovascular problems and which occurs in epidemic and sporadic forms and is initiated by a virus, most likely an enterovirus. M.E. is similar in a number of significant ways to illnesses such as multiple sclerosis, Lupus and poliomyelitis (polio). M.E. is a distinct, recognisable (and testable) entity that can be diagnosed relatively early in the course of the disease, providing that the physician has some experience with the illness. The Nightingale Definition of M.E. now also makes diagnosis easier than ever before even for those with no experience with the illness. For information on how authentic neurological M.E. is characterised and diagnosed see: Testing for Myalgic Encephalomyelitis and What is Myalgic Encephalomyelitis?

1. htSome groups are working on renaming, redefining or sub-grouping CFS. Won’t this fix the problem? Isn’t that at least a step in the right direction?
2. How can I assist my doctor in giving me a correct diagnosis?
3. Point by point, what is the difference between M.E. and CFS? I’m still not entirely sure.
4. Are M.E. advocates saying that ‘CFS’ is made up of people who have M.E. and people who are – as Wessely, Sharpe, Lloyd and the CDC and others say – malingering, ‘enjoying the sick role’ or exaggerating their symptoms and so on? That we either have M.E. or else we fit the psychological or behavioural model of CFS?
5. How and why did this mess start? Why was CFS created?
6. There is a lot of information out there about people with M.E. being harmed and suffering abuse because of the confusion between M.E. and CFS, and so on. Are people misdiagnosed with ‘CFS’ but who don’t have M.E. affected by this too?
7. I’m worried…what if I have tests done, and M.E. is ruled out?
8. What about all those ‘CFS’ (and ‘CFIDS’ ‘ME/CFS’ and Myalgic ‘Encephalopathy’ etc.) advocacy groups out there, why haven’t they been telling me this information? Why haven’t they told me that CFS is a misdiagnosis?
9. I’m still confused about terminology, what are the correct terms to use?
10. Are M.E. advocates saying that every single article or piece of research which uses the term ‘CFS’ is completely irrelevant with regard to authentic M.E. patients?
11. M.E. advocates have an interest in the actions of CFS groups and people misdiagnosed with CFS and so on; they’re affected by our actions to some extent. Is the information here (and in similar papers) designed to gain advantages for people with M.E. at the expense of people misdiagnosed with CFS who don’t have M.E.?
12. I seem to fit the 2003 Canadian definition of ‘ME/CFS’ does this mean that I definitely have M.E.?
13. I have a post-viral fatigue syndrome, that’s basically the same thing as M.E. isn’t it?
14. But don’t ‘CFS’ and M.E. at least have severe fatigue in common?
15. I’m absolutely appalled by this ‘CFS’ scam and all the abuse and neglect of so many very ill people. What else can I do to help improve things?

Question 1: Some groups are working on renaming, redefining or sub-grouping CFS. Won’t this fix the problem? Isn’t that at least a step in the right direction?
Answer: No, it most definitely isn’t. Sub-grouping different types of ’CFS,’ refining the bogus ‘CFS’ definitions further or renaming ‘CFS’ with some variation on the term M.E. would achieve nothing and only create yet more confusion (which the corporations involved would no doubt continue to take advantage of, to the continued detriment of patients).

Changing the name of the bogus disease construct of ‘CFS’ to some variation on the term M.E. is not at all a step in the right direction. This move will actually be a huge step BACKWARD for everyone with M.E. and all those patients misdiagnosed with CFS. It will make it harder than ever for anyone to distinguish between ‘CFS’ and authentic M.E., and for those misdiagnosed with CFS to be able to receive a correct diagnosis and treatment.

The ‘CFS name change proposal’ seems nothing more than a political stunt; designed to appease (justifiably) angry patients and make them feel like something is being done and that progress is being made finally – but not to actually effect any real change. The proposal that the name of ‘CFS’ should be changed to a variation on the term M.E. – despite the fact that the term is completely scientifically inaccurate for the vast majority of the patients involved and that this term has already been TAKEN by a very well-defined (and scientifically sound) patient group for over 50 years – merely because it ‘sounds a lot more serious’ makes a mockery of legitimate advocacy, and of science, logic and ethics.

• For more information see: Why the disease category of ‘CFS’ must be abandoned and What is Myalgic Encephalomyelitis?

Question 2: How can I assist my doctor in giving me a correct diagnosis?
Answer: There are a number of things you can do to help your doctor understand your illness better. You could:

1. Write down your medical history and your family medical history in detail (including mentioning any pre-existing illnesses you may have had) for your doctor.
2. Write down a description of the onset of your illness for your doctor. (Was it acute or gradual? This could be very important. You could also write a list of anything that happened just before you became ill that may or may not be relevant potentially; did you have a chemical exposure, tick bite, car accident, head and neck trauma, vaccination, viral infection, surgery, overseas travel or a blood transfusion just before you became ill, for example.)
3. Write a detailed description of all of your symptoms, taking care to be as specific as you can.
4. You could keep an activity diary for a week, to show your doctor exactly how your symptoms affect your life and what things you can and can’t do since you became ill.
5. Write a list for your doctor of any physical signs of illness that you have noticed (eg. rashes).
6. Show your doctor copies of any relevant test results you have

• All of the above advice may well be unhelpful for people with M.E. as the vast majority of doctors wouldn’t recognize the disease no matter how textbook perfect your case was and how perfectly you described it (unlike many of the illnesses misdiagnosed as ‘CFS’ which are very well known). There are almost no doctors available who are aware of even the most basic facts about M.E., and the vast difference between M.E. and ‘CFS.’ You might have no choice but to try to bring your own doctor up to speed about M.E. yourself. Perhaps a good way to start (after showing them some of the legitimate information on M.E. out there created by genuine M.E. experts such as Dr Hyde or Dr Dowsett) might be to get some of the tests done that can help confirm (or rule out) a M.E. diagnosis. If your doctor refuses to give you any of the more expensive tests such as MRI or other brain scans, perhaps you could ask to begin with some of the more simple and inexpensive tests: a Romberg test, tests of the immune system (eg. tests of your natural killer cells etc.), the ESR test, sitting/standing and lying down pulse and blood pressure readings and so on, and then try to move forward from there. See Testing for Myalgic Encephalomyelitis for more information.
• It must be noted here that a significant number of sufferers (with M.E. and with many other illnesses) will not be able to make practical use of any of this advice, unfortunately. They will have no access to appropriate medical care or testing at all; either due to being severely ill and housebound and/or bedbound, or simply because the medical care available to them is of such a low standard (or so acutely influenced by the financially and politically motivated propaganda surrounding M.E. and ‘CFS’ as to be of a very low standard solely in this area). This is a human rights travesty and is the reason we desperately need some REAL activism for people with M.E., and all those misdiagnosed with ‘CFS’ who have other illnesses. This is a worldwide disgrace, especially in wealthy ‘first world’ countries such as the US, UK, Canada, the Netherlands, New Zealand and Australia, and so on. This desperately needs to change. (For everyone who is in this terrible situation, hopefully it will change for you in the near future.)
• A note on alternative practitioners: While many different types of alternative practitioners (naturopaths, acupuncturists, iridologists and so on) may often be helpful in treating different conditions to a certain extent, this does not mean that they are equally skilled when it comes to the initial diagnosis of your condition. Such practitioners may have very little knowledge about different illnesses or training in diagnosis (or at all), and will also not have access to any of the appropriate tests which are so important in this field. (You’re more than likely to get 5 different wrong diagnoses from 5 different practitioners, or to be told by all 5 of them that you have a simple dietary problem that is easily treated by over-the-counter remedies – when in reality you have a serious neurological or cardiovascular condition that is nowhere near so easily treated. You might then also be blamed by the practitioner for your lack of improvement and accused of ‘not wanting to be well’ which is of course very unfair and inappropriate.) Be very wary of any diagnosis (or advice) given by an alternative practitioner especially after a very short and superficial consultation, and without the appropriate testing. If it sounds too good to be true it probably is. Use alternative therapists only once you have a correct diagnosis and you are confident that they have sufficient knowledge about your illness to be of use, and not to cause you harm. (For example, it is a rare practitioner who understands the difference between M.E. and ‘CFS/fatigue’ and this could lead to a very negative outcome if you do have M.E. Despite popular opinion, ‘natural’ therapies are not without significant risk.)

Question 3: Point by point, what is the difference between M.E. and CFS? I’m still not entirely sure.
Answer: The terminology of M.E. and ‘CFS’ is often used interchangeably, incorrectly and confusingly. However, the DEFINITIONS of M.E. and CFS are very different and distinct. In a nutshell:

• Myalgic Encephalomyelitis is a systemic acquired illness initiated by a virus infection which is characterised by (scientifically measurable) damage to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis. The onset of M.E. is always acute. M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can always 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 affects adults and children. Fatigue is not a defining symptom of M.E., nor even an essential symptom of M.E. 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. There are more than 64 M.E. symptoms, ranging in severity from mild to severe, to life-threatening.
• Chronic Fatigue Syndrome is a man-made construct created in the US in 1988. It is not a distinct disease, but a diagnosis of exclusion based on the presence of the symptom of fatigue. CFS cannot be diagnosed until after 6 months have passed. If serious abnormalities are found on testing, a person no longer qualifies for a diagnosis of ‘CFS.’ (The fatigue in ‘CFS’ is ‘medically unexplained.’) The onset of ‘CFS’ may be gradual or acute. A diagnosis of ‘CFS’ does not mean that a person has any distinct disease, including M.E. In essence, every diagnosis of CFS can only ever be a misdiagnosis. ‘CFS’ is made up of people with a vast array of unrelated psychological and non-psychological illnesses with little in common but the symptom of fatigue.

Dr Byron Hyde MD also explains that:

• For more information see: What is Myalgic Encephalomyelitis?

Question 4: Are M.E. advocates saying that ‘CFS’ is made up of people who have M.E. and people who are – as Wessely, Sharpe, Lloyd and the CDC and others say – malingering, ‘enjoying the sick role’ or exaggerating their symptoms and so on? That we either have M.E. or else we fit the psychological or behavioural model of CFS?
Answer: Of course not! A million times NO! These groups and individuals are motivated by vested political and financial vested interests, rather than scientific or ethical concerns. All of their claims about M.E. or ‘CFS’ patients should be taken with an enormous grain of salt, if not rejected outright and ridiculed because of this bias. Their work has very little – if anything – to do with legitimate science or REALITY.

Question 5: How and why did this mess start? Why was CFS created?
Answer: The disease category of CFS was created in a response to an outbreak of what was unmistakably M.E., but this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process that did not, and could not exist.

So why was the renaming and redefining of the distinct neurological disease Myalgic Encephalomyelitis allowed – or indeed designed – to become so muddied? Indeed why did Myalgic Encephalomyelitis suddenly need to be renamed or redefined at all? Money. There was an enormous rise in the incidence of Myalgic Encephalomyelitis in the late 1970s and the 1980s and so it was at this time that certain psychiatrists and others involved in the medical insurance industry (on both sides of the Atlantic) began their campaign to reclassify the severely incapacitating and discrete neurological disorder known as Myalgic Encephalomyelitis as a psychological or ‘personality’ disorder; in order to side-step the financial responsibility of so many new claims (Marshall & Williams 2005a, [Online]). As Professor Malcolm Hooper explains:

For example, the psychiatrist Simon Wessely – arguably the most powerful and prolific author of papers which claim that M.E. is merely a psychological problem of chronic fatigue – began his rise to prominence in the UK at the same time the first CFS definition was being created in the USA (1988). Wessely, and his like-minded colleagues – a small group made up mostly but not exclusively of psychiatrists (colloquially known as the ‘Wessely School’) has gained dominance in the field of M.E. in the UK (and increasingly around the world) by producing vast numbers of papers which purport to be about M.E. For at least a decade, serious questions have been raised (and published) in international medical journals about possible scientific misconduct and flawed methodology in the work of Wessely and his colleagues. It is only relatively recently however that his long-term involvement as medical adviser – and board member – to a number of commercial bodies having a vested interest in how M.E. (and ‘CFS’) is managed have been exposed. As Professor Malcolm Hooper goes on to explain:

The resulting ‘confusion’ between the distinct neurological disease M.E. and the man-made bogus disease category of ‘CFS’ has caused an overwhelming additional burden of suffering for those who suffer from neurological M.E. and their families, as well as the many millions of people with various mild, moderate and severe psychiatric and non-psychiatric illnesses who are also lumped together with a ‘CFS’ misdiagnosis. It's a human rights travesty and a huge mess, that is for certain – but it is not an accidental mess – that is for certain too (Hyde 2006a, [Online]) (Hooper 2006, [Online]) (Hyde 2003, [Online]) (Hooper 2003a, [Online]) (Dowsett 2001a, [Online]) (Hooper et al. 2001, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online]).

Question 6: There is a lot of information out there about people with M.E. being harmed and suffering abuse because of the confusion between M.E. and CFS, and so on. Are people who are misdiagnosed with ‘CFS’ but who don’t have M.E. affected by this too?
Answer: Yes, they are. Patients with M.E. are not the only patient group to be negatively affected in this way. Other patient groups misdiagnosed as CFS are also denied appropriate diagnosis and treatment. They may also be subjected to inappropriate psychological interventions such as CBT and GET, as well as serious neglect and abuse. Some of the conditions commonly misdiagnosed as CFS are very well defined and well-known illnesses and very treatable – but only once they have been correctly diagnosed. Some conditions are also very serious or can even be fatal if not correctly diagnosed and managed, including Myalgic Encephalomyelitis.

Treating this diverse and heterogeneous patient group as if their illnesses each shared the same symptoms, aetiology, pathology and response to treatment is inappropriate and highly unlikely to benefit the health and wellbeing of any of the patient groups involved. Treating this ‘CFS’ group as if they each shared a specific psychological or behavioural illness is also clearly inappropriate. Aside from representing a heterogeneous patient group, many (likely the vast majority) of those with the diagnosis are not mentally ill, and do not suffer from behavioural problems (Hooper 2006, [Online]) (Hyde 2006, [Online]) (Hooper et al. 2001, [Online]).

Doctors, researchers and the general public are also negatively affected in various ways by this subterfuge (As explained previously in Smoke and Mirrors). Truly, the only groups which gain from the ‘CFS’ confusion are insurance companies and various other organisations and corporations which have a vested financial interest in how these patients are treated, including the government.

Question 7: I’m worried…what if I have tests done, and M.E. is ruled out?
Answer: Discovering that you don’t have M.E. is NOT bad news! It’s true it would mean you having to start the process of getting a correct diagnosis again… but it also means that you could be about to be diagnosed with an illness that has treatments available, and which is not subject to so much abuse and misunderstanding from friends and family, the media and medical professionals as M.E. There are potentially a lot of positives in other words.

When looking at what diagnosis is correct for you, the worst thing you could do is to be determined to have a M.E. diagnosis – and to skew and warp everything you read about M.E. to incorrectly fit your own case study – if that isn’t what you have. There are as many downsides to sticking to an incorrect M.E. diagnosis as a ‘CFS’ misdiagnosis. It wont help you. Surely what is important is that your diagnosis is correct; not how serious a name it has, or what sort of reputation or history it has (or what history YOU have with it), or anything else.

Question 8: What about all those ‘CFS’ (and ‘CFIDS’ ‘ME/CFS’ and Myalgic ‘Encephalopathy’ etc.) advocacy groups out there, why haven’t they been telling me this information? Why haven’t they told me that CFS is a misdiagnosis?
Answer: That is a very good question.

It is a nightmare. Legitimate activism and advocacy for M.E. patients and all those misdiagnosed with ‘CFS’ who have other illnesses is (with a small number of notable exceptions) almost non-existent. This is why things are so bad for patients, and we are subject to so much abuse. In a perfect world what might happen would be that:

1. Many of these ‘CFS’ groups (or whichever term they use) would soon choose to become anti-CFS groups; dedicated to eradicating the bogus disease category of CFS and all the abuse and neglect and harm it causes, and helping all those misdiagnosed with ‘CFS’ to reject this misdiagnosis and to find their correct diagnosis and get appropriate treatment and support finally.
2. Some of the these groups would become genuine Myalgic Encephalomyelitis advocate groups; dedicated to eradicating the bogus disease category of ‘CFS’ (and the confusion between M.E. and ‘CFS’) and fighting for the rights of people with M.E. and for M.E. patients to be treated based on science, and for the serious neurological disease they have (in the same way others with comparable neurological illnesses are treated).
3. These two types of groups would also work together to eradicate the fictional disease category of ‘CFS,’ while at the same time respecting the rights of each distinct patient group equally.

• Don’t be fooled into thinking that groups and individuals who support the CDC, or Wessely or Lloyd, or CBT or GET, or renaming or subgrouping ‘CFS’ or who claim that M.E. and ‘CFS’ are the same, or who support any of the other myths surrounding M.E. are being helpful. They are not, whatever their claimed (or actual) intentions and no matter how superficially caring and ‘nice’ they may seem. We must stop supporting these ignorant/inept/sell-out groups and individuals if we are ever to get anywhere. As one severely ill M.E. sufferer commented recently, ‘What they are doing is not just stupid and corrupt, it is murder.’ Supporting groups and individuals who support the same propaganda that is the cause of our problems, and who support our abusers... is even sicker than we are, truly. Don’t let these useless groups and individuals waste another 20 years for us, don’t let things continue to get WORSE for us; as is happening now. Knowledge is power. For more information see: Problems with 'our' M.E. (or ‘CFS’ etc.) advocacy groups. This paper is also available as (animated) video, see the Audio and Video page for details. See also: Activism and Advocacy. (Also note that while these problems do sadly affect the vast majority of ‘advocacy’ groups, of course there are a very small number of genuine M.E. advocacy groups out there that are worthy of our support; the 25% M.E. Group for example, and the Nightingale Research Foundation.)

Question 9: I’m still confused about terminology, what are the correct terms to use?
Answer: When the terms CFS, CFIDS, ME/CFS, CFS/ME, Myalgic Encephalopathy or ME-CFS are used what is being referred to may be patients with/facts relating to any combination of:

There is no such disease/s as ‘CFS’ – the name CFS and the bogus disease category of CFS must be abandoned (along with the use of other vague and misleading umbrella terms such as ‘ME/CFS’ ‘CFS/ME’ 'ME-CFS' 'CFIDS' and 'Myalgic Encephalopathy' and others), for the benefit of all the patient groups involved. In other words, Myalgic Encephalomyelitis must be referred to as Myalgic Encephalomyelitis. Lyme disease must be referred to as Lyme disease. Fibromyalgia must be referred to as Fibromyalgia. Post-viral fatigue syndromes must be referred to as post-viral fatigue syndromes, and so on.

• For more information on the name Myalgic Encephalomyelitis (and the problems with some of these other terms including ME’opathy) see: Meitis? A slender string to our bow, The Terminology of ME & CFS, and ME and CFS, The Definitions. See On the name MEitis for more articles.
• The main goal of M.E. advocacy is not to have it understood that ‘CFS’ is a real serious non-psychological illness; there is no such disease/s as ‘CFS’ that is the entire point. The real issue is the fact that M.E. is not at all the same thing as ‘CFS.’ It is hard to see how this goal could be achieved using ridiculous and counterproductive terms such as ‘ME/CFS’ which imply that the two terms and patient groups are interchangeable; they are not. Despite its popularity with some groups, the term ME/CFS makes no more sense scientifically than made up terms such as cancer/diabetes or headache/broken leg. It only makes it harder for us to achieve our goals. For more information on why the bogus disease category of ‘CFS’ must be abandoned, (along with the use of other vague and misleading umbrella terms such as ‘ME/CFS’ ‘CFS/ME’ 'CFIDS' and 'Myalgic Encephalopathy' and others), see: Why the disease category of ‘CFS’ must be abandoned and The Terminology Explained and Smoke and Mirrors.

Question 10: Are M.E. advocates saying that every single article or piece of research which uses the term ‘CFS’ is completely irrelevant with regard to authentic M.E. patients?
Answer: No, certainly not. (I am not aware of anyone who does have this view in the M.E. community.)

• It should be noted however, that virtually all of the research which does relate to M.E. but which uses the term ‘CFS’ (or ‘ME/CFS’ or ‘CFIDS’ etc.) is also contaminated in some way by CFS propaganda. For more information on some of the most common inaccuracies and ‘CFS’ propaganda included in genuine research (conducted using terms such as ‘CFS’), see the paper: Putting Research and Articles on M.E. into Context. (The goal for the future of course is for there to be appropriate funding again for genuine M.E. research that is unbiased and wholly untainted by ‘CFS’ and which involves a 100% Myalgic Encephalomyelitis patient group. This cannot happen soon enough. Funding for legitimate M.E. research by government is currently non-existent; considering the brutal severity of the illness and the vast numbers of patients involved, this is a worldwide disgrace.)

Question 11: M.E. advocates have an interest in the actions of CFS groups and people misdiagnosed with CFS and so on; they’re affected by our actions to some extent. Is the information here (and in similar papers) designed to gain advantages for people with M.E. at the expense of people misdiagnosed with CFS who don’t have M.E.?
Answer: The advice and information given here aimed at all those misdiagnosed with ‘CFS’ who do not have M.E. would be exactly the same even if there were no such illness as M.E.

Severity just isn't the point at all! It's true that many of the illnesses misdiagnosed as ‘CFS’ are far less severe than M.E. and that many of these illnesses resolve on their own within a few years, we know that for a fact. For example, the most recent study of ‘CFS’ patients conducted by the CDC showed that on average the average combined workload (employment and chores) of those diagnosed with CFS by the CDC research definition was close to 48 hours per week. This same research discovered that these ‘CFS’ patients illnesses were so mild that 84% of people who qualified for the diagnosis, didn't even know they were sick at all until the CDC told them they had ‘CFS’ (click here for more information).

• A note on non-M.E. patients misdiagnosed with CFS: I am primarily a M.E. advocate, but for years I’ve gotten almost as many emails from people misdiagnosed with ‘CFS’ who don’t have M.E. as I do people who do have M.E., and they’re often just as desperate for help and have just as sad and tragic stories to tell. This paper is a sincere attempt to help all those people misdiagnosed with ‘CFS’ who don’t have M.E. I wrote it so that I would have something to send to these people that might be helpful (and that I don’t have to type from scratch each time). I hope this is to be the first of a series of papers aimed NOT at people with M.E. but at those patients who have been lumped into a ‘CFS’ misdiagnosis who have other illnesses for which they do not yet have an accurate diagnosis, and who are also harmed immeasurably by the creation of the fictional disease category of ‘CFS’ and so on. Needless suffering and death is needless suffering and death.
• If you fit into this category and have any suggestions on any extra information you’d like to see in this paper, please send them by email. Please be as brief and as ‘to the point’ as you can. I’m also after ‘from CFS misdiagnosis to accurate diagnosis’ stories, for future inclusion on this page. (Let me know; how long did it take you to get a correct diagnosis? How did this new diagnosis affect you and your health? What was your correct diagnosis in the end? Do you have any tips for other sufferers, any useful advice on getting a correct diagnosis? Are there any books or articles in particular that you’d like to recommend? Etc.)

Question 12: I seem to fit the 2003 Canadian definition of ‘ME/CFS’ does this mean that I definitely have M.E.?
Answer: No, it doesn’t. As the name suggests, this is a mixed M.E. and ‘CFS’ definition. It is essentially yet another redefinition of CFS, but with some of the symptoms (and other features) of M.E. tacked on.

The Canadian ‘ME/CFS’ guidelines are not a pure/accurate M.E. definition. They are, as the name suggests, a ‘ME/CFS’ definition, a bizarre mix of two entirely different entities; M.E. and ‘CFS.’ Because of the flaws in this definition, it seems entirely possible that one could conduct research on a Canadian ‘ME/CFS’ patient group, which did not contain even one genuine M.E. sufferer. Despite the good parts of this definition, this has to be cause for enormous concern and caution regarding the use of these guidelines (Hyde 2006, [Online]).

• An additional note on the Canadian guidelines: Like the Fukuda and Oxford ‘CFS’ definitions, the Canadian ‘ME/CFS’ guidelines also selects a heterogeneous (mixed) patient group; although it has been shown that the Canadian patient group is less likely to have a psychiatric illness as the cause of their symptoms, and more likely to be more seriously disabled by their illness. Despite its many imperfections however, the Canadian guidelines remain overall vastly superior to each of the definitions of ‘CFS’ (for the diagnosis and study of M.E.) which are not M.E. definitions in any part. Read more about the benefits and the limitations of the Canadian Guidelines at: Canadian Guidelines Review, The Definitions of M.E. and Testing for M.E.
• See also: The Nightingale Definition of M.E. by Dr Byron Hyde, a TESTABLE M.E. definition. (M.E. must not be diagnosed solely based upon symptomatology as this seems very open to misinterpretation; the tests which can distinguish M.E. from other conditions must also be utilized if at all possible. eg. MRI brain scans.)
• An additional note on ‘fatigue’: Just as some M.E. sufferers will experience other minor and non-essential symptoms such as vomiting or night sweats some of the time, but others will not, the same is true of fatigue. The diagnosis of M.E. is determined upon the presence of certain neurological, cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, muscular, gastrointestinal and other symptoms (and so on) – the presence or absence of mere ‘fatigue’ is irrelevant. The symptoms and disability associated with M.E. are also not ‘mysterious’ or ‘medically unexplained.’ See: What is Myalgic Encephalomyelitis?

Question 13: I have a post-viral fatigue syndrome, that’s basically the same thing as M.E. isn’t it?
Answer: No, it isn’t. They’re apples and oranges. There are a number of post-viral fatigue states or syndromes which may follow common infections such as mononucleosis/glandular fever, hepatitis, Q fever, Ross river virus and so on. M.E. is an entirely different condition to these post-viral fatigue syndromes however. People suffering with any of these post-viral fatigue syndromes do not have M.E. any more than they have other distinct neurological diseases such as multiple sclerosis or motor neurone disease.

An abundance of evidence spanning over 70 years shows that it is simply not possible that M.E. could be caused by the Epstein-Barr virus, any of the herpes viruses (including HHV6), glandular fever/mononucleosis, Cytomegalovirus (CMV), Ross River virus, Q fever, hepatitis, chicken pox, influenza or any of the bacteria which can result in Lyme disease (or other tick-borne bacterial infections). The symptoms, pathology and incubation periods, and so on, simply do not fit. M.E. is also not a form of chemical poisoning. We know for a fact that M.E. is caused by a virus, a virus with an incubation period of 4-7 days – and there is very good evidence to suggest that the culprit is an enterovirus (Hyde 2006, [Online]) (Hyde 2007, [Online]) (Hooper 2006, [Online]) (Hooper & Marshall 2005a, [Online]) (Hyde 2003a, [Online]) (Dowsett 2001a, [Online]) (Hooper et al. 2001, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online]) (Ryll 1994, [Online]).

Myalgic Encephalomyelitis does have some limited similarities – to varying degrees – to illnesses such as multiple sclerosis, Lupus, post-polio syndrome (and polio), Gulf War Syndrome and chronic Lyme disease, and others. But this does not mean that they represent the same etiological or pathobiological process. They do not. M.E. is a distinct neurological illness with a distinct; onset, symptoms, aetiology, pathology, response to treatment, long and short term prognosis – and World Health Organization classification (G.93.3) (Hyde 2006, [Online]) (Hyde 2007, [Online]) (Hooper 2006, [Online]) (Hooper & Marshall 2005a, [Online]) (Hyde 2003a, [Online]) (Dowsett 2001a, [Online]) (Hooper et al. 2001, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online])

• See: The outbreaks (and infectious nature) of M.E. section for more information.
• See M.E. and other illnesses for more information.

Question 14: But don’t ‘CFS’ and M.E. at least have severe fatigue in common?
Answer: Myalgic Encephalomyelitis is not synonymous with being tired all the time.

Fatigue and feeling ‘tired all the time’ are not at all the same thing as the very specific type of paralytic muscle weakness or muscle fatigue 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 up to 50% (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, Reynaud’s phenomenon, 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 post-illness limits leaving M.E. patients extremely disabled (Bassett 2007, [Online]).

M.E. expert Dr Melvin Ramsay M.D. explained that this unique characteristic: ‘is virtually a sheet-anchor in the diagnosis of Myalgic Encephalomyelitis and without it a diagnosis should not be made’ (1986, [Online]). This intolerance of certain levels of physical or cognitive activity, sensory input and orthostatic stress is one of the many things which separate Myalgic Encephalomyelitis so distinctly from various post-viral fatigue states or other illnesses involving chronic fatigue. M.E. expert Dr Byron Hyde M.D. also writes that: ‘In MRI spectography it has been shown that because of an abnormal build-up of normal metabolites, the muscle cell actually shuts down to prevent cell death [in M.E.]’ (Hyde 2003, [Online]). People with M.E. are experiencing a form of heart failure which can be exacerbated by even relatively low levels of activity. People with M.E. are made very ill and disabled by this problem with their cells (and their mitochondria, and so on); it affects virtually every bodily system, and has also led to death in some cases. Many patients are severely disabled and housebound and bedbound. People with M.E. would give anything to instead 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. These terms are not accurate or specific enough to describe what is happening in M.E. M.E. is a neurological illness of extraordinarily incapacitating dimensions that affects virtually every bodily system – not a problem of chronic fatigue (Hyde 2006, [Online]) (Hooper 2006, [Online]) (Hooper & Marshall 2005a, [Online]) (Hyde 2003, [Online]) (Dowsett 2001, [Online]) (Hooper et al. 2001, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online]) (Dowsett 1996, p. 167) (Dowsett et al. 1990, pp. 285-291) (Dowsett n.d., [Online]).

• For more information see Myalgic Encephalomyelitis is not fatigue, or 'CFS'. Many of the worlds leading M.E. experts have spoken out strongly against ‘fatigue’ being claimed to be the defining/essential symptom of M.E. see M.E. is not defined by 'fatigue' to read some of their comments.
• For more information on the symptoms of M.E., including the unique reaction people with M.E. have to activity, see: The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List

Question 15: I’m absolutely appalled by this ‘CFS’ scam and all the abuse and neglect of so many very ill people. What else can I do to help improve things?
Answer: The only way forward, for the benefit of society and every patient group involved, is that:

So what you can do to help is to PLEASE help to spread the truth about ‘CFS’ and about Myalgic Encephalomyelitis. This appalling abuse and neglect of so many severely ill people on such an industrial scale is truly inhuman and has already gone on for far too long. Knowledge is power.

• For more information see: What is Myalgic Encephalomyelitis?