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.

M.E. vs M.S.: Similarities and differences

M.E. vs MS  M.E. and MS are very similar diseases medically in many ways. However, for reasons that have nothing to do with science, the two diseases are treated very differently politically and socially. The contrast could not be more stark.

M.E. patients are treated terribly (and often abused terribly, even unto death in some cases), yet there is no public outcry as there would be if MS patients were treated in this same way. Thus people with M.E. find themselves in the terrible position of actually ENVYING people who have MS in some ways.

This paper is available in two different versions.

Note that the 'condensed and modified' version of the text has been modified to omit all reference to individual case studies.

This page features the standard version of the text.

See the Downloads section below to download this paper in Word or PDF format. This paper is including in the new Caring for the M.E. Patient book which also features a Foreword by Dr Byron Hyde.

M.E. vs M.S.: Similarities and differences

Copyright © Jodi Bassett February 2009. This version updated March 2009. From www.hfme.org                          
 

One of my most vivid memories of early childhood is of the day that a woman with Multiple Sclerosis (MS) came to my primary school to give a talk to my class. She spoke to my 9 year old classmates and me about MS and encouraged us to help to raise funds for research into MS with the MS-read-a -thon. She was somewhere between 30 and 35 at the time I think, perhaps a bit younger.

 

I don’t recall if the woman with MS was in a wheelchair or just sitting, but I remember how well she spoke. She was such a confident and engaging speaker. She held our full attention for the entire time she spoke. I felt that she knew what she was doing was important, and was proud to be able to do it. I thought she was so brave and so strong and inspiring.

 

I remember that she told us that her first indication that something was wrong with her was the day that she ended up with burns on her back because she could no longer correctly feel the water temperature. She described this burning so vividly. I felt so sorry for her, and for everyone with MS. It seemed like an unbelievably terrible thing to happen to someone. Just unimaginably awful, like your worst nightmare. I wished so much that people with MS didn’t have to go through such horrible experiences.

 

The talk on MS made a real impact on me at the time and stayed with me for a long time afterward. For years I read as many books as I could during the annual MS-read-a-thon.  I spent a lot of time thinking about the woman with MS I’d met and I wondered how she was. I felt so sorry for her.

 

I could never have imagined back then that a mere 10 years later I’d be in the terrible position of ENVYING this same woman with MS.

 

 

 

My story

What happened was that when I was 19 I suddenly became ill with Myalgic Encephalomyelitis (M.E.). I was a normal, active and happy 19 year old when suddenly everything changed.  I experienced severe brain damage from one moment to the next. The first I knew of my illness was when my brain, my heart, my balance and just my whole body just stopped working like they used to and started doing all sorts of strange and terrible things. I couldn’t think anymore and I couldn’t do anything anymore like I’d used to. I had literally dozens of extreme and ever-changing symptoms and disabilities that became so much worse whenever I did anything at all.

 

Unfortunately my illness worsened steadily over the next decade or so. 14 years later I’m completely housebound and about 99% bedbound. I’m very disabled in many different ways, physically and cognitively.

 

 

 

Medical similarities between MS and M.E.

The reason I’m envious is not so much because of the type of illness MS is medically compared to M.E. M.E. and MS are actually very similar medically in many ways, as the following list demonstrates.

 

Table 1. Medical similarities between MS and M.E.

 

Multiple Sclerosis

Myalgic Encephalomyelitis

MS is primarily a neurological disease, i.e. a disease of the central nervous system (CNS).

 

M.E. is primarily a neurological disease, i.e. a disease of the central nervous system (CNS).

 

Demyelination (damage to the myelin sheath surrounding nerves) has been documented in MS.

 

Demyelination (damage to the myelin sheath surrounding nerves) has been documented in M.E.

 

Evidence of oligoclonal bands in the cerebrospinal fluid has been documented in MS.

 

Evidence of oligoclonal bands in the cerebrospinal fluid has been documented in M.E.

 

No single definitive laboratory test is yet available for MS but a series of tests are available which can objectively confirm the diagnosis with some certainty.

 

No single definitive laboratory test is yet available for M.E. but a series of tests are available which can objectively confirm the diagnosis with a high degree of certainty.

 

MS can be severely disabling and cause significant numbers of patients to be bedbound or wheelchair-reliant.

 

M.E. can be severely disabling and cause significant numbers of patients to be bedbound, wheelchair-reliant or housebound.

 

MS can be fatal (either from the disease itself or from complications arising from the disease)

 

M.E. can be fatal (either from the disease itself or from complications arising from the disease)

 

MS significantly reduces life expectancy.

 

M.E. significantly reduces life expectancy. (M.E. reduces life expectancy by a greater period than MS: see Table 3.)

 

Symptoms/problems which occur in MS include: impaired vision, nystagmus, afferent pupillary defect, loss of balance and muscle coordination, cogwheel movement of the legs, slurred speech, difficulty speaking (scanning speech and slow hesitant speech), difficulty writing, difficulty swallowing, proprioceptive dysfunction, abnormal sensations (numbness, pins and needles), shortness of breath, headaches, itching, rashes, hair loss, seizures, tremors, muscular twitching or fasciculation, abnormal gait, stiffness, subnormal temperature, sensitivities to common chemicals, sleeping disorders, facial pallor, bladder and bowel problems, difficulty walking, pain, tachycardia, stroke-like episodes, food intolerances and alcohol intolerance, and partial or complete paralysis.

 

Symptoms/problems which occur in M.E. include: impaired vision, nystagmus, afferent pupillary defect, loss of balance and muscle coordination, cogwheel movement of the legs, slurred speech, difficulty speaking (scanning speech and slow hesitant speech), difficulty writing, difficulty swallowing, proprioceptive dysfunction, abnormal sensations (numbness, pins and needles), shortness of breath, headaches, itching, rashes, hair loss, seizures, tremors, muscular twitching or fasciculation, abnormal gait, stiffness, subnormal temperature, sensitivities to common chemicals, sleeping disorders, facial pallor, bladder and bowel problems, difficulty walking, pain, tachycardia, stroke-like episodes, food intolerances and alcohol intolerance, and partial or complete paralysis.

 

MS can cause orthostatic intolerance (dizziness or faintness on standing).

M.E. commonly causes severe orthostatic intolerance (which often worsens to become severe POTS and/or NMH).

 

Short-term memory loss, word finding difficulty, difficulty with concentration and reasoning and other forms of cognitive impairment occur in 50% of MS patients. 10% of MS patients have cognitive impairments severe enough to significantly affect daily life.

 

Short-term memory loss, word finding difficulty, difficulty with concentration and reasoning and other forms of cognitive impairment occur in 100% of M.E. patients. Almost all M.E. patients have cognitive impairments severe enough to significantly affect daily life.

 

MS patients often become severely more ill in even mildly warm weather. Cold weather can also cause significant problems.

 

M.E. patients often become severely more ill in even mildly warm weather. Cold weather can also cause significant problems.

 

MS can affect autonomic nervous system function (including involuntary functions such as digestion and heart rhythms).

 

M.E. can affect autonomic nervous system function (including involuntary functions such as digestion and heart rhythms).

MS is thought to cause a breakdown of the blood brain barrier.

 

M.E. is thought to cause a breakdown of the blood brain barrier.

 

A positive Babinski's reflex is consistent with several neurological conditions, including MS. (Babinski's reflex or extensor plantar reflex is a test for dysfunction of the corticospinal tract.)

 

A positive Babinski's reflex (or extensor plantar reflex) is consistent with M.E.

 

The Romberg test will often be abnormal in MS. (This test measures neurological or inner ear dysfunction.)

The Romberg test will be abnormal in 95% or more of M.E. patients.

An abnormal neurological exam is usual in MS. Abnormalities are also commonly seen in neuropsychological testing in MS.

 

An abnormal neurological exam is usual in M.E. Abnormalities are also commonly seen in neuropsychological testing in M.E.

 

MS causes a certain type of brain lesion detectable in MRI brain scans. Abnormalities are also seen in EEG and QEEG brain maps and SPECT brain scans in MS.

 

M.E. causes a certain type of brain lesion detectable in MRI brain scans. Abnormalities are also seen in EEG and QEEG brain maps and SPECT brain scans in M.E.

 

Hypothyroidism is found in many MS patients.

 

Hypothyroidism is found in almost all M.E. patients.

 

The glucose tolerance test is often abnormal in MS.

 

The glucose tolerance test is often abnormal in M.E.

 

Low blood pressure readings (usually low-normal) are common in MS.

Low blood pressure readings are extremely common in M.E. Severely low blood pressure readings as low as, or lower than, 84/48 (or 75/35 according to many anecdotal accounts) are common in severe M.E. or those having severe relapses. This can occur at rest or as a result of orthostatic or physical overexertion. At times BP readings can be so low that they cannot be measured by the machine and error messages appear. Circulating blood volume measurements of only 50% to 75% of expected are also commonly seen in M.E.

 

Some MS patients experience a partial remission during pregnancy.

 

Some M.E. patients experience a partial remission during pregnancy.

 

Patients with MS have an increased risk of dying from heart disease or vascular diseases.

 

Deaths from cardiac problems are one of the most common causes of death in M.E.

 

Although MS is primarily neurological, it also has aspects of autoimmune disease.

 

Although M.E. is primarily neurological, it also has aspects of autoimmune disease.

 

MS usually affects people between the ages of 20 and 40 years, and the average age of onset is approximately 34 years. Onset occurs between the ages of 20 to 40 years in 70% of patients.

 

The average ages affected by M.E. are similar to those seen in MS. However, the average age of onset may be significantly younger in M.E.

 

MS was once thought to be rare in children, but we know that around 5% of MS sufferers are under 18.

 

Around 10% of M.E. sufferers are under 18.

 

MS affects more than a million adults and children worldwide.

M.E. affects more than a million adults and children worldwide. (M.E. is at least as common as MS, and may be up to twice or three-times as common.)

 

 

As well as there being many similarities in symptoms, the brain scans from M.E. and MS patients are often very similar, as this chart illustrates. MS and M.E. both cause a certain type of brain lesion detectable in brain scans. Those with MS tend to have fewer brain lesions of a larger size, while M.E. is associated with a greater number of these lesions of a somewhat smaller size.

 

M.E. and MS are so similar medically that they are sometimes misdiagnosed as one another. The names used for M.E. and MS also indicate the similarities between the two diseases. MS was first described in 1868, and MS has also been known as ‘disseminated sclerosis’ or ‘encephalomyelitis disseminate.’ Myalgic Encephalomyelitis has existed for centuries but was first comprehensively scientifically documented in 1934, when an outbreak of what at first seemed to be poliomyelitis (polio) occurred in Los Angeles (M.E. occurs in outbreaks as well as sporadically). The term Myalgic Encephalomyelitis was coined in 1956. Earlier names for M.E. include ‘atypical polio’ and atypical multiple sclerosis.’


B
oth MS and M.E. have been correctly classified as organic diseases of the central nervous system in the World Health Organization’s International Classification of Diseases for many decades. MS is classified at G 35 and M.E. at G 93.3.

 

 

 

Why are people with M.E. often envious of people with MS?

MS and M.E. are distinct diseases, but they are in many ways very similar medically. However, despite the medical similarities, the two diseases are treated very differently politically and socially. The differences between the political and social treatment of MS and M.E. are the reason for my envy of MS sufferers.

 

Table 2. Political and social differences between the treatment of MS and M.E.

 

Multiple Sclerosis

Myalgic Encephalomyelitis

MS is a neurological disease, so MS patients are treated primarily by neurologists. In countries such as Australia, Canada, New Zealand, the USA and the UK, the majority of MS patients have access to a neurologist who is knowledgeable about MS.

M.E. is also a neurological disease that is appropriately treated by a neurologist, yet very few M.E. patients have access to a doctor who knows even the most basic facts of M.E., let alone access to a neurologist who has experience and knowledge of M.E. Access to other appropriate specialists such as immunologists and cardiologists is also rare. In countries such as Australia, Canada, New Zealand, the USA and the UK, the vast majority of M.E. patients have no access to medical care at all. These  patients have access only to a GP who has little or no knowledge of M.E. or who is openly hostile to the concept of M.E.

 

Media reports on MS are of a high standard. If reporters put out stories about MS that were not factual, there would be a public outcry and then an apology made.

 

Media reports on M.E. are of a very low standard. It is extremely common to read articles claiming to be about M.E. but which do not contain even one accurate fact about the disease and belittles and actively causes harm to patients. Complaints made by M.E. patients and experts are ignored.

 

Suicide is a significant cause of death in MS, especially in younger patients, due to the severity of the disease.

 

Suicide is a significant cause of death in M.E., especially in younger patients, due to the severity of the disease, but more often suicides are due to the lack of medical or social or financial care and support. Some M.E. patients commit suicide because they feel they have no other choice as they are too disabled to care for themselves and are given little or no appropriate support including financial support. Abuse from the medical profession and from friends and family is also a serious issue.

 

Media reports on those who have experienced some recovery from MS, involve genuine MS patients.

 

Media reports of ‘miracle recoveries’ from M.E. touting one pseudo-treatment or another are very common. However, the patients described did not have M.E. (or any other serious neurological disease).  Falsely claiming the diagnosis of M.E. and claiming a ‘miracle recovery’ implies that M.E. can be easily cured, which is not true.  This leads to further inappropriate treatment and abuse.

 

MS advocacy groups do good work for MS patients and help raise awareness and funds for research. MS groups are run for and by MS patients.

 

The vast majority of M.E. advocacy groups do not advocate on behalf of M.E. patients but instead work directly against the best interests of M.E. patients, e.g. they often argue that money for biomedical research for M.E. is not necessary. The vast majority of these groups and not run for or by M.E. patients, and their agendas are not helping M.E. patients. These groups often distribute information on M.E. which is completely inaccurate and which also belittles and misrepresents M.E. patients, and works to increase mistreatment and abuse of M.E. patients.

 

MS charities would never support treatments for MS which had zero chance of success, and which very often caused a severe and prolonged deterioration of the patient, or even death.

So-called M.E. charities very often fully support and push ‘treatments’ for M.E. which have zero chance of success, and which very often cause a severe and prolonged deterioration of the patient, can also ruin a patient’s chances of significant recovery in the future, or even cause death.

 

MS is a well-known illness, thus patients are in general treated appropriately by doctors and other medical staff.

 

M.E. is an illness that most medical staff are not well educated about. M.E. patients are often treated inappropriately by doctors and other medical staff. In some cases this results in serious abuse. M.E. patients are also often ridiculed, taunted or treated with disrespect.

 

People with MS will generally qualify for the appropriate welfare and medical insurance payouts they are entitled to.

 

People with M.E. are very often denied the appropriate welfare and medical insurance payouts they are entitled to. Some must reply on the support of friends and family to survive, while others may become homeless, or feel they have no other choice but suicide.

 

MS receives many millions of dollars in government funding for research, and millions more are raised each year by the big MS charities around the world.

 

M.E. receives no government funding worldwide, and very little is raised by M.E. charities. What little is raised by these groups is virtually always spent researching non-M.E. patient groups or mixed patient groups (which may or may not contain a small percentage of M.E. patients). Even those studies which do include a small proportion of M.E. patients are useless as mixed patient groups make any results meaningless.

 

When research says it involves MS patients one can have a high degree of confidence that this is indeed the case.

When research says it involves M.E. patients one can only have a very low degree of confidence that this is indeed the case.

 

When a patient with MS chooses euthanasia, public sympathy is expressed for the degree of pain and suffering that must have led to such a choice.

When a patient with M.E. chooses euthanasia, public ridicule and derision is often expressed. Even when, as is almost always the case with euthanasia, the person with M.E. was severely affected and bedbound, unable to speak, needed tube feeding and was in constant agony and had been for many years or decades, it is very often blithely claimed by the media that not only was the person not severely ill, but that the person was not in fact ill at all. Despite all evidence to the contrary, often at best the media will claim that the patient had a mild disease that could be easily cured within just a few days or weeks or months if the patient only truly wanted to get better.

 

 

Although MS and M.E. are very similar medically, they are worlds apart politically and socially.  

 

 

 

Why is the public perception so different with M.E. as compared to MS?

The public perception of MS reflects the reality. Most members of the public are aware of the basic facts: that MS is a neurological disease affecting the muscles, and that it can be very disabling or fatal. Understanding of these facts is also reflected in the way the media handles MS, government policy on MS, and so on.

 

The public perception of M.E. could not be further removed from the medical reality of the disease.

 

Most members of the public, if they have heard of M.E., have heard only an entirely inaccurate account of the disease which they mistakenly believe to be based on science. Despite the fact that M.E. is a serious neurological disease comparable to MS, Lupus and polio, M.E. is seen by most of the public and even by most of the medical profession most often as ‘trivial’ or very ‘mild.’ M.E. is perceived and presented similarly by most of the media and by government. M.E. patients are treated utterly differently to those with comparable diseases such as MS. The contrast is stark.

 

There is an abundance of evidence showing that MS is an organic neurological disease that can be severely disabling or fatal. The same is true of M.E. The evidence supporting M.E. is no less compelling, although you would not know this from the way M.E. is dealt with. If anything M.E. has more scientific credibility; it is far easier to diagnose due to its acute onset and more obvious, systemic and unique pathology; the cause is far more certain in M.E., and so on.

 

To make a long story short, the reason M.E. is treated so differently than MS despite them being comparable diseases has nothing to do with science or evidence, and everything to do with MONEY.

 

M.E. patients are being (mis)treated based purely on mere financial considerations. Financial vested interest groups have subverted and obscured the reality of M.E. for their own benefit. Many millions of dollars are being made (or saved) by powerful medical insurance companies, and others, by this scam. (This is explained in detail in What is Myalgic Encephalomyelitis? A historical, medical and political overview.)

 

To the serious detriment of ethics, science, basic human rights and the welfare of patients, this clever and very well-funded ‘marketing campaign’ has fooled almost everyone. The scam is paper thin and easily disproved if one merely takes a small amount of time to look. The financial vested interests and outrageous conflicts of interest involved are obvious too.

 

This abusive money-making fiction about M.E. is widely accepted in the community, but it has about as much to do with science as astrology has to astronomy. It had been scientifically disproven hundreds of times over, including before the massive cover-up/scam was even created. Repeating a lie over and over again will never make it true, but it seems it often will make lots of people believe it to be true, especially if the sources are seen as ‘authorities.’ Which is why this abusive and unscientific money-making fiction about M.E. has continued for 20 years now and has only becomes more extreme and entrenched over time.

MS is not being targeted in the same way as M.E. by insurance companies etc. This is a matter of timing: MS emerged earlier, received more medical attention and has been longer established within mainstream medicine than M.E. Because of this fortunate timing difference, MS has escaped the modern manipulation for profit which has plagued M.E. for the last 20 years.

 

The medical researchers and doctors who have determined how MS is dealt with and how it is perceived have been working in good faith/scientifically and ethically, whereas the perceptions about M.E. have been formed in an entirely unscientific and unethical manner due to the vested and conflicting interests mentioned above. For example, doctors working for medical insurance companies are also able to get influential government advisory positions in the field of health which play a large role in determining how diseases are treated, categorized and even defined. Giving corporations with vested interests the power to unscientifically ‘re-define’ and/or re-classify (i.e. wrongly re-classify) a disease to suit their own interests can be immensely lucrative for that corporation. Mere political influences have determined how M.E. is dealt with and how it is perceived, which is not true of MS.

 

The difference between the treatment of sufferers of the two diseases is also due to this manipulation of medical reality which harms M.E. patients but not MS patients. 

 

Why M.E. patients are so poorly and inappropriately treated is clear. How to stop this abuse when so many groups that are supposed to be there to protect patient rights – government, so-called M.E. charities and the media etc. – are colluding in a cover-up for their own benefit is far less clear unfortunately.

 

Thus M.E. patients grapple with enormous difficulties and frustrations and challenges which MS patients do not face: fighting the lies about their illness and fighting to get anyone to listen to the truth.  How patients with M.E. can do this and work to change the situation when they are so very ill and disabled, and when so many are too ill to even be able to read the basic facts about what is happening, and when they have so little other support, is not clear.

 

How can patients with M.E. get through to the vast majority of the public who refuse to believe government and industry could be so immoral (despite ample examples of past transgressions)?  How does one convince others of the truth when so many seemingly benign companies, government departments, journalists or supposedly patient-based organisations are producing so much completely mutually supportive and superficially convincing propaganda?

 

These are hard questions and simply enormous problems which M.E. patients are forced to deal with, and which MS patients need not ever consider.

 

 

I sometimes wonder, how would my life be different if I’d had MS instead of M.E.?

I sometimes think about the women with MS who came to my school and I can’t help but compare myself to her. I’m sure of the fact that she was suffering terribly, but at the same time, this woman could speak and could do significant charity work. She could leave the house and could sit in a chair or wheelchair for extended periods. She was nowhere near as cognitively impaired and as limited with speech and so on as I am now. Even seeing her for just half an hour or so, it was obvious how many things she could do that I am now unable to do due to M.E.

 

I wonder sometimes: does she know what it is like to lose friends and family due to outright lies being told about your illness by the media and government? I wonder if she knows how lucky she is to be able to go to the emergency room when she is very unwell, and in fear of dying, and know that she will be treated with respect and given the appropriate care; rather than laughed at, mocked in front of the other patients, refused tests or treatment and just sent home. I wonder if she knows how lucky she is that millions of dollars are being spent trying to cure her disease. Such knowledge must be so comforting… I wish I had that for myself and for others with M.E. It would be amazing.

 

I wonder if she knows how lucky she is to not have to dread every piece of government mail that comes her way, worrying that it’ll inform her that her measly pension will be cut off if she doesn’t jump through hoops x, y and z – even though she is actually too ill and disabled to do any of these things. I wonder is she knows how crazy it is that one can actually be too ill to get some kinds of welfare support designed for people who are very ill…if one’s illness doesn’t have the right ‘reputation.’ I wonder if she knows how lucky she is to have access to a doctor who knows at least the basic facts of her disease and how to treat it. Very few patients with M.E. have such a ‘luxury.’

 

I wonder if she knows how lucky she to not have to worry that the latest unscientific study or article that claims to be about her disease will cause those around her to mistreat her due to the study either involving an entirely different and unrelated patient group, or being done by those who routinely skew results to suit their own vested interests, or both. I wonder if she knows how lucky she is that awareness campaigns for MS are commonly seen in magazines, newspapers and on TV… I’ve never seen even one awareness campaign for M.E., and publicity only repeats lists of the most harmful myths and lies again and again. Yet with MS there is the read-a-thon, various huge MS balls and MS societies even sponsor (and get donations from) various theatre productions. The list goes on and on.

 

I wonder if she knows how lucky she is to have MS and not M.E. So often those of us with M.E. wish we had MS instead, with all the rights and respect that come with that. It is something I hear other people with M.E. say a lot…

 

I wonder if this woman perhaps now has severe MS. Perhaps she does, perhaps she is now even more disabled than me, or has died from MS. (I really hope not, I hope she didn’t end up with the severest form of MS.) I have no way of knowing. But even so, I can’t help but wonder if she knows, or knew, how lucky she was/is to be in a position of being severely ill because of chance, because she was just unlucky to get the severe form of her disease, rather than because your doctor gave you inappropriate advice and didn’t take your disease seriously or think it was really worth any care or concern.

 

If I had MS, chances are I’d be less severely affected. I’d also be far less likely to have such strained family relationships. There is a very good chance I’d still be able to work, part-time at least, and I would likely have been able to finish my degree. There is a huge chance that I would be well enough to sit for more than a few minutes a day and to make phone calls. There is a 40% chance that my worst symptom could be mere fatigue, as it is for 40% of MS patients. That would be just unimaginably wonderful…

 

Right now I can only dream of being able to sit, or of being well enough to use a wheelchair one day.  I can only dream of one day again being able to leave the house. It has been over 3 years since I have left the house and 8 years since I could do so regularly. I can only dream of being able to meet in person with other sufferers and being able to participate more fully in advocacy. I can only dream of not being quiet, still and alone at least 22 hours of every day. I can only dream of being able to have company and being talked to without it making me severely ill. People with MS, as with M.E., often have problem talking but MS patients don’t get just as ill from listening like M.E. patients do. My life would be so different without that.

 

I accept that I’m ill. Illness and other bad things just happen. It makes more sense to me to think ‘why NOT me?’ instead of ‘why me?’ I have never thought ‘why me?’ I don’t see that any of us is any more or less deserving than anyone else of becoming ill.

 

What I find hard to accept however is that my doctor at the time I was first ill is responsible for making me severely affected, yet she has not only paid nothing for her mistake, but she has not even admitted responsibility for it. I am still paying for this medical mistreatment more than 10 years later and I probably will for the rest of my life. This mistreatment took me from functioning at a level of 40% when I was first ill, down to my current level (of the last 10 or more years) of less than 5%.

 

I also have no doubt that this same doctor is still giving the same inappropriate and harmful advice to other patients in the same position and ruining their lives too. Even worse, I know that this is happening all over the world over and over again, to thousands of M.E. patients, including young children.

 

Severe injury is inflicted on thousands of people with M.E. by inappropriate medical advice every year, but this does not seem to cause any public concern. Often patients that were moderately ill, are left severely affected and wheelchair-reliant, others need cardiac care units or end up bedbound and housebound and unable to care for themselves for years afterward, due to inappropriate medical care, and some M.E. patients are killed. Many severely affected M.E. patients are as ill as they are because when they were ‘only’ moderately affected they were recommended (or forced to comply with) inappropriate medical advice. There would be outrage if even a tiny fraction of the harm done to M.E. patients was done to people with other diseases, but the outrage is just not there for us. We get less care and help than those with vastly less serious diseases and we are ridiculed and stigmatized. While the fight to stop discrimination based on race, religion or sexuality has come a long way, for some reason it is perfectly acceptable to discriminate against M.E. patients. It is also considered acceptable to deny us our basic human rights. That is very, very hard to live with.

 

It is also so hard to live with the fact that some people with M.E. are reduced to such poverty by refusal of welfare or insurance payments, which they would have received if they had had MS, that they have had to go to rubbish bins to search for food. That some people with M.E. have died from inappropriate and extremely cruel medical mistreatment, and their abusers will never be brought to justice. That some M.E. patients have had their whole family or all of their friends disown them due to misconceptions about M.E. That some M.E. patients have their rights taken away, and are forced to participate in treatments that cannot improve their condition but which carry an enormous risk of worsening the disease seriously, or causing death. That some parents of kids with M.E. have been charged with causing their kids’ illness (falsely accused of Munchausen’s by proxy) and had their kids removed from their care, and refused all medical treatment and care. That small children very ill with M.E. have been thrown in swimming pools (and very nearly drowned), or denied food or contact with family, in order to try to force them to do the things that they are too ill to do because of their disease.

 

Sometimes I wake up in the morning and think I must have just had a bad dream… sometimes it is hard to believe that all this is really happening, that such an obvious and cruel injustice could be allowed to take place in such a supposedly enlightened and scientific society as ours. That so many thousands of very, very ill people, ridiculously severely ill people, the illest of the ill, could actually be routinely neglected, left at home just to die alone, mistreated, ridiculed and abused – or even outright killed by mistreatment. That this could all be going on with the public, media and our human rights groups just not caring or saying anything. Especially when all the while much, much smaller and more minor injustices (many that affect only ONE person for example) are given so much attention and generate so much free-flowing outrage at the abuser and support for the victim.

 

M.E. is one of the most severely disabling and devastating diseases there is, and deserves appropriate medical attention and treatment. Yet despite all the medical advances in today’s high-tech world, it is as though M.E. patients live in another era and receive only the most primitive and rudimentary care – if indeed they receive any care at all.

 

 

Conclusion

People will often say to M.E. patients ‘at least you don’t have MS. It could be worse, you should be grateful you don’t have something more serious.’ Such comments are mind-blowing in their ignorance and are so inappropriate. If anything the opposite is true. Taking everything into account, the physical reality of each disease plus the medical and political misconceptions and abuse surrounding M.E., I don’t see how anyone would ever choose M.E. over MS, if such a choice were possible.

 

I’m in no way implying that MS isn’t an horrific and terrible disease, or that those with MS have any more resources or funding than they rightly deserve and need, or that everyone with MS always gets every service they need easily and will always have a very supportive family, or that the woman with MS I met didn’t deserve a lot of my sympathy or anyone else’s. Of course not. 

 

The point is just that people with M.E. face many additional political and social hurdles compared to the average MS patient. It just makes no sense that patients with these two very similar diseases are treated so utterly differently in almost every way just because of political manipulation for profit. That the medical similarities and medical evidence count for so little. That scientific reality, ethics and logic count for so little.

 

It is as bizarre and unfair as if those with broken arms were given x-rays and had the broken bone set and put in a cast until it had healed and so on, while those with broken legs were told to go home and stop wasting the doctor’s time, or that perhaps taking up jogging would make them feel better.

 

MS is a severely disabling neurological disease that causes a high degree of suffering. So is M.E. However, there is a whole other world of suffering experienced by M.E. patients which is unknown to MS patients and others with diseases where the public perception and political treatment of the disease is closely aligned with the medical reality. It is an additional type of suffering which can be as much of an additional burden as the disease itself. When you combine these political problems with a disease as severe as M.E., it makes having M.E. one of the worst hells on earth.

 

The treatment of people with M.E. must be based on science at last, as is the treatment of MS patients. All M.E. patients want is to be treated the same way as those with MS and those with other comparable illnesses. All M.E. patients want is for studies on M.E. to actually involve M.E. patients, for the term M.E. to only be permitted to be used to describe actual M.E. patients, for the facts about M.E. to be taught at medical schools in the same way MS facts are, for appropriate money to be made available for M.E. research, for government policy on M.E. to reflect the reality of M.E., and for the media (including medical journals) to write articles about M.E. with the same standard of factual accuracy as articles are written on MS, and so on.

 

These things don’t seem much to ask in this day and age. But right now, they are so far away from M.E. patients. If anything they get further and further away as each year passes.

More information

For more information on all aspects of M.E. – including what you can do to help M.E. patients’ desperate fight for justice and fair treatment – please see: What is Myalgic Encephalomyelitis? A historical, medical and political overview.

Additional notes on this text

Despite some similarities M.E. and MS are also each distinct diseases, with distinct features and differences, as the list below demonstrates.

 

Table 3. Medical differences between MS and M.E.

 

Multiple Sclerosis

Myalgic Encephalomyelitis

MS does not occur in outbreaks.

 

One of the most important facts about M.E. is that it occurs in outbreaks as well as sporadically. More than 60 outbreaks of M.E. have been documented worldwide since 1934. M.E. outbreaks have often followed polio outbreaks.

 

Brain scans (MRI scans) are the primary means of diagnosis of MS. Lumbar puncture tests are also often used in combination.

 

Brain scans (MRI and SPECT scans) are the primary means of diagnosis of M.E. although other tests can also be used in combination. This includes 24 hour Holter-monitor testing (a type of heart monitor), tilt table testing, impedance cardiography testing, EEG brain maps, the Romberg test, tests of the immune system, circulating blood volume tests, the ESR test, exercise testing, and so on.

 

MS causes a certain type of brain lesion detectable in MRI brain scans.

 

MS and M.E. cause a certain type of brain lesion detectable in MRI brain scans. Those with MS tend to have fewer brain lesions of a larger size, while M.E. is associated with a greater number of these lesions of a somewhat smaller size.  

 

The onset of MS is usually gradual (although there is an acute onset subgroup). In early MS, symptoms that might indicate any number of possible disorders come and go. Some people have symptoms that are very difficult for physicians to interpret, and these people must ‘wait and see.’ The diagnosis may sometimes only be made after significant time has passed. Even if a doctor is experienced with MS, MS is very difficult to diagnose.

 

The onset of M.E. is acute and the combination of symptoms is very distinctive, and there are a number of unique features of the disease. M.E. can be diagnosed (and tested for) within just two weeks of the initial onset. If a doctor is experienced with M.E., M.E. is not at all difficult to diagnose.

MS patients often exhibit an abnormally high erythrocyte sedimentation rate (ESR)

 

M.E. is one of only five or so diseases where abnormal erythrocyte sedimentation rates as low as 0 are often seen. (In some cases of M.E. abnormally high ESR rates may also be seen periodically.)

 

High cortisol levels are often seen in MS

 

Low cortisol levels are often seen in M.E.

 

Orthostatic intolerance causing dizziness or faintness may occur in up to 50% of MS patients.

M.E. always causes significant vascular and cardiac problems. M.E. causes cardiac insufficiency, and reduced circulating blood volume; circulating blood volumes as low as 50% have been documented in M.E. This is often accompanied by problems of orthostatic intolerance including often severe postural orthostatic tachycardia syndrome (POTS) and Raynaud’s phenomenon. Heart rates can be as high as, or higher than, 150 bpm after even short periods of maintaining an upright posture.

 

MS does not cause the same type of post-exertional paralytic muscle weakness seen in M.E.

The diagnosis of M.E. should never be made without the post-exertional paralytic muscle weakness (affecting all muscles and organs, including the brain and the heart) which is unique to M.E. being present. Muscles may function normally to begin with but there is a continued loss of post-exertional muscle power after even a minor degree of physical effort; three, four or five days, or longer, will elapse before full muscle power is restored.

 

MS is associated with a reduced cancer risk.

 

M.E. is associated with an increased cancer risk.

 

The cause of MS is hotly debated and there is a lack of consensus.

 

M.E. occurs in outbreaks and it is definitively known to be caused by a virus; a virus with a 4 – 7 day incubation period. There is also overwhelming evidence to suggest that M.E. is caused by an enterovirus; the same type of virus which causes polio.

 

On average, multiple sclerosis shortens the lives of affected women by about 6 years, and men by 11 years.

 

M.E. may reduce life span by 25 years on average.

 

It is estimated that about 33% of people living with MS use a wheelchair most of the time while 66% of people with MS will never need to use a wheelchair.

 

In M.E. the level of disability is turned around and the vast majority will be significantly disabled and unable to be active and at times need a wheelchair, or be bedbound and so on. Many patients are also far too ill to use a wheelchair.

 

Some MS patients have cardiac problems as part of their disease.

 

Every M.E. patients has significant cardiac and vascular problems as these are the cause of many of the symptoms and disability of M.E. Cardiac and vascular problems in M.E. are part of the core disease process, not merely a complication.

 

50% of MS patients are cognitively impaired. The severity of impairment can range from clinically undetectable to global and severe.

 

100% of M.E. patients are significantly cognitively impaired. Even most moderately affected patients are severely cognitively impaired and in the most severely affected patients the deficits can be profound. For a significant number of M.E. patients this is their most severe disability.

 

Some MS patients may difficulty speaking.

Some M.E. patients have difficulty speaking and also an equal difficulty listening to the speech of others or even tolerating having someone quietly keep them company. A few minutes with company or listening to speech can cause severe and pronged relapse and extreme suffering in M.E.

 

In some people MS has only minimal impact, in other people it progresses very rapidly to total disability. The majority of people with Multiple Sclerosis do not become severely disabled. Two-thirds of people with Multiple Sclerosis are ‘able to walk with or without the use of aides and continue to lead productive and satisfying lives.’ Most people with multiple sclerosis will be able to continue to walk and function at their work for many years after their diagnosis. 1 of 3 patients will still be able to work after 15-20 years.

 

The majority of M.E. patients spend many years or decades being significantly disabled. 80% or more of M.E. patients are unable to attend work or school and for most this occurs soon after the initial onset of the disease. Many patients cannot achieve tasks of daily living. At least 30% of M.E. patients are extremely disabled and have very little quality of life for years or decades; they must spend almost all of their time alone in a dark room and are often only barely able to communicate, if at all.

 

Fatigue is the most common symptom of MS, up to 40% of MS patients describe fatigue as the most disabling MS symptom, which is higher than weakness, spasticity, motor control, or bowel or urinary problems.

 

Fatigue is only a minor symptom in M.E. and it is not experienced by all M.E. patients. More concerning in M.E. are severe and disabling cardiac, neurological, cognitive and metabolic problems.

 

Incontinence can occur in both M.E. and MS, but is significantly more common in MS.

 

Alcohol intolerance can occur in both M.E. and MS, but while MS patients may experience symptoms such as facial flushing etc. even small amounts of alcohol can cause a severe worsening of the overall condition in M.E. lasting 24 hours or more. It can cause complete incapacitation Alcohol intolerance affects the vast majority of M.E. patients.

 

There are 4 major types of MS:  Benign (20%), Relapsing-remitting (25%), Secondary progressive (40%), Primary progressive (15%). MS can be mild to severe to very severe, and can last only a few months or years or be lifelong.

 

M.E. can be relapsing and remitting, chronic and stable, degenerative, or progressive. More than 30% of M.E. cases are progressive and degenerative. The rate of M.E. patients who are considered in full remission is less than 6% (some doctors say the rate is 0%).

 

Rest in the early stages of MS has very little if any impact on the long-term course of the disease, although tiredness can worsen some symptoms in the short-term.

M.E. patients who are given advice to rest in the early stages of the illness (and who avoid overexertion thereafter) have repeatedly been shown to have the most positive long-term prognosis.  Many M.E. patients are severely affected because they were given inappropriate advice to exercise by their doctors in the earlier stages of their illness.

 

The amount of rest a person with MS gets has a noticeable affect on their short term well-being.

 

The amount of rest a person with M.E. gets, and their level of exertion, has an enormous effect on their short term and long term well-being. The effects from severe overexertion on one day or week can still be having severe effects on the patient many months or even years later.

 

Patients with MS must be given access to the appropriate care and support as soon as possible after becoming ill, although this will not significantly alter the course of the disease nor prevent any patients becoming severely affected.

 

Patients with M.E. must be given access to the appropriate care and support as soon as possible after becoming ill. Access to the appropriate care has an enormous impact on the course of the disease in M.E.; many severely affected M.E. patients would not have become severely affected had they been given the correct care and support when they were first ill.

 

Death does not occur in MS due to overexertion.

 

Death can and does occur in M.E. due to even low levels of physical or orthostatic overexertion.

 

 

To be clear, while M.E. can be far more disabling than MS and some aspects of it are worse than is seen in MS, there is also no doubt that some aspects of MS are worse than some aspects of M.E.

 

Please note that none of these charts is designed to be comprehensive or detailed enough to be used to differentiate between a MS or a M.E. diagnosis. They merely provide a very brief overview of this topic.

 

For more information on the diagnosis of M.E. see: Testing for Myalgic Encephalomyelitis 

 

References

This paper, like all the papers by me (Jodi Bassett) on this site, merely provides a brief summary of some of the most important facts of Myalgic Encephalomyelitis. A list of, or links to, references to original texts is given at the end of each paper, and these references are very highly recommended as essential additional reading for anyone with a real interest in Myalgic Encephalomyelitis. For further information on the references used on this site, and to read the reference list for this paper, see the References page.

 

Additional online resources on Multiple Sclerosis used in creating this paper include the following:

1.      http://emedicine.medscape.com/article/1146199-overview

2.      http://goliath.ecnext.com/coms2/gi_0199-2806083/Rethinking-cognitive-function-in-multiple.html

3.      http://health.nytimes.com/health/guides/disease/multiple-sclerosis/complications.html

4.      http://jnnp.bmj.com/cgi/content/abstract/65/1/56

5.      http://msassociation.org/

6.      http://www.articlesbase.com/diseases-and-conditions-articles/surprising-facts-about-multiple-sclerosis-437282.html

7.      http://www.harchhyperbarics.com/HBOT-spect-brain-blood-imaging.htm

8.      http://www.hendess.net/ms_e.htm

9.      http://www.jamesshuggins.com/h/ms-1/multiple-sclerosis-faq.htm

10.    http://www.msaustralia.org.au/

11.    http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=814

12.    http://www.mssoc.ca/

13.    http://www.mssocietyindia.org/

14.    http://www.mult-sclerosis.org/mssymptoms.html

15.    http://www.mymultiplesclerosis.co.uk/

16.    http://www.neurology.org/cgi/content/abstract/53/4/883

17.    http://www.springerlink.com/content/4bqgxlm2ge38maga/

18.    http://www.themcfox.com/multiple-sclerosis/ms-symptoms/index.html



Acknowledgements: Thank you to Lesley Ben for valuable assistance with editing.

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

Relevant quotes

M.E. appears to be in this same family of diseases as paralytic polio and MS. M.E. is less fulminant than MS but more generalized. M.E. is less fulminant but more generalized than poliomyelitis. This relationship of M.E.-like illness to poliomyelitis is not new and is of course the reason that Alexander Gilliam, in his analysis of the Los Angeles County General Hospital M.E. epidemic in 1934, called M.E. atypical poliomyelitis.

Dr Byron Hyde 2006

 

The term myalgic encephalomyelitis (means muscle pain, my-algic, with inflammation of the brain and spinal cord, encephalo-myel-itis, brain spinal cord inflammation) was first coined by Ramsay and Richardson and has been included by the World Health Organisation (WHO) in their International Classification of Diseases (ICD), since 1969. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination.

Professor Malcolm Hooper 2006

 

M.E. is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction which causes a breakdown in bodily homoeostasis. It has an UNIQUE Neuro-hormonal profile.

Dr Elizabeth Dowsett

 

There is ample evidence that M.E. is primarily a neurological illness. It is classified as such under the WHO international classification of diseases (ICD 10, 1992) although non neurological complications affecting the liver, cardiac and skeletal muscle, endocrine and lymphoid tissues are also recognised. Apart from secondary infection, the commonest causes of relapse in this illness are physical or mental over exertion.

Dr Elizabeth Dowsett

 

Possible costing for ME support has been based on 3 times the cost of maintenance for multiple sclerosis on the supposition that ME is [up to] 3 times as common. The only costs that we can be sure of are those derived from the failure of appropriate management, and of inappropriate assessments which waste vast sums of money and medical time while allowing patients to deteriorate unnecessarily.
Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialised experience about poliomyelitis and associated infections seem to have vanished mysteriously!

Dr Elizabeth Dowsett

 

People in positions of power are misusing that power against sick people and are using it to further their own vested interests. No-one in authority is listening, at least not until they themselves or their own family join the ranks of the persecuted, when they too come up against a wall of utter indifference.

Professor Hooper 2003

 

From Charles M Poser MD in the book The Clinical and Scientific Basis of Myalgic Encephalomyelitis edited by Dr Hyde (paraphrased by the author): There are many clinical and laboratory similarities in M.E. and MS, but what separates them is: the plethora of systemic manifestations in M.E., the orthostatic tachycardia seen in M.E., the outbreaks of M.E., the striking involvement of muscle in M.E. and the muscle pathology seen in M.E., the characteristic myalgias and arthralgias in M.E., and the symptoms such as cold extremities and flu-like symptoms etc. seen in M.E. These features are not seen in MS and their presence may even preclude a MS diagnosis.

 

I have a friend who has MS and she is really very independent and able to get about (unlike me). My Dr isn’t very helpful but at least she is kind. My friend with MS has said how similar our illnesses are, yet she has a special MS nurse, a supportive Dr and the knowledge that when she tells someone she has MS they will be understanding and non-judgemental. If only we could have half of that I would be happy. I had to use a wheelchair for 2 years and I had people saying I was lazy and why was I 'carrying on' like that! Can you believe it?! When I was so severely ill and couldn’t get out of bed for months on end people told my husband I needed 'motivating' and that I was probably having a nervous breakdown and was depressed... If only I had MS!!!

I really do feel that we are left to cope with such a debiltating illness alone almost. My husband has nearly lost his job because of time off he has had to take to care for me when I’m at my worst. We struggle financially as we only have one wage coming in and yet we get no help or support from anywhere, and yet if I was suffering from MS people would be appalled at my situation. As it is, most people don’t even think I’m ill and that I should just 'pull myself together' - if only I could! And this is the joke, we are too ______ ill to stand up for our rights and make a change!!! 

Lena, M.E. patient

 

i have to admit i get very resentful when i see the adverts on television for everything except ME (not to deny serious diseases their rightful place in public awareness, but it's hard to be left out in the cold year after year, decade after decade). on a bad day i probably feel as wretched as people with severe MS; on a "good" day i probably feel about as well as people with a mild case of MS. but then it's probably the same for them ... degrees of severity.

having struggled with ME in the face of doubt, invalidation, "pep talks", psychologizing, and so on since i was 28 ... i'll be turning 55 next month ... i think that had someone come to me and given me the choice, i'd have chosen MS for exactly the reasons put forth by so many others. that ME isn't recognized as "real" (despite the mountains of evidence to the contrary) often pushes me to the brink of absolute despair, and seeing so many other people receiving the kind of care i need just adds insult to injury.

and if, as often happens, a diagnosis of ME is overturned by some shrink who thinks him/herself able to determine within 45 that one is "mentally ill", and words such as "somatoform" and/or "personality" disorder appear on one's charts, this negation becomes not only humiliatingly invalidating, it becomes dangerous. when a doctor sees any of those words in one's chart, they immediately write off the complaint which has been brought to them as "attention-seeking" or good old fashioned hypochondria.

i have long since lost count of the times i've been scolded and sent home untreated, only to return a few days later with symptoms no one can deny or ignore. I fully expect my cause of death will be medical neglect.

Namaste, severe M.E. patient

 

MS patients are very well treated, the standard of care is high. But someone with M.E. who has a similar disease and can often be twice as ill, will most often not get even a tenth of the same level of care. That is if they manage to get any care at all, many don’t. Lots just left at home to die.

The diseases are so similar, it’s so insane. Shouldn’t care given be based just on the actual need? On how ill and disabled someone is and what type of disease it is? (ie. Neurological, cardiac and so on.) It really should not matter so very much, as it does now, what name your illness has and what reputation, how it has merely been ‘marketed’ to the public by insurance companies and so on!

M.E. patient

 

If you’re going to ‘choose’ a disease to get, make sure you choose something like MS, Parkinson’s or even better breast cancer! It seems like about half of all the awareness campaigns you see are for breast cancer. There is no equality, it seems to be all based on who can spend the most time campaigning and if you have a disease that makes you too ill to do that, or that has been skewed by vested interest groups as M.E. has, then too bad. I would ‘choose’ breast cancer or MS over M.E. any day! (If you HAD to choose something.) Who wouldn’t? Not only do they get high quality care and a whole bundle spent on research, they can get support to help them feel good about themselves and maintain their appearance (wig and make-up classes), they can get support during treatments (eg. hand holding during chemo) and even get support for their whole families sometimes! That is fine of course, and good for them… but it’s hard to hear about when we are desperate for even basic treatment. M.E. makes most of us sicker than someone going through chemo, every day, for years and decades too. Sigh.

M.E. patient

 

My sister who is 34 has known since August 2008 that she has MS. She was paralyzed on 1 side of her body as she went to the hospital. There she got the diagnosis MS. She got antibiotics by a drip and got well again. Now she has no complaints except for some tiredness. She now works 4 days a week instead of 5.

As her neurologist heard from her about me, he wanted to see me to do some tests because of my neurological problems. I got an MRI, but it did not indicate MS. Later on he told my sister that she had to do less and I had to do more!!!!! He had seen me twice and didn't know much about me or about ME.

My sister gets all the attention and understanding. From family, from friends, from work, from doctors and she probably won't have any problem getting care and a wheelchair and stuff when she may need it later on. I had to buy my wheelchair by myself as I improved somewhat to be able to use it finally. There are wheelchairs in which you can lay down. I've asked for one, but I didn't get one because 'it works anti-rehab'. As I was a bit better and could walk a few meters again I had to give back my special electric wheelchair in which you can lay down. I also get only 1 hour of ADL-care a day while I'm bedridden for 10 years now. I also haven't seen my family for 10 years, because they think I'm lazy and don't want to work.

I've lost all my teeth at age 36, because my gp didn't believe I had severe burning acid.

There are months I can't swallow, but I don't get tube-feeding. Not even fluid by IV. Why? Because it would make my body even more lazy and then my body won't eat or drink ever by itself again, supposedly. I even don't get oxygen when I have severe breathing probs because of the same reason. The doctors just don't believe me, despite all the evidence there is out there about M.E. and about my own case.

I wish I had MS. As I heard of my sister having MS I was jealous and I still am. I so hoped I had MS as I went back to the neurologist for the result of the MRI. When I got home I cried in frustration and disappointment. I still feel very sad and disappointed about it weeks later.

Ingeborg Geuijen, (The Netherlands), author of www.borgofspace.com

 

I do think that the simultaneous rise of AIDS at the same time as the 80's US ME epidemics sucked the life out of any possible attention by public health towards ME. It is so hard to talk about because AIDS is a TERRIBLE disease but they got the funding and the recognition and research because it was a very powerful, large, population group here in NA, well used to activism, and BTW, men, at least in the early days. And just look what has happened for PWA's, all the research and progress, all the social support and awareness. There's quite a strong AIDS group here. I found out that a woman I know with it, who has a husband and kids, who functions as healthy running around all over the place, and who gets substantial caregiver hours. And here I am, unable to do my own shopping or housework and can't get one lousy hour. And one can never talk about it, it's not PC <sigh>.

I do not begrudge them their care etc. but only wish for 1-1/0 of the help that they get (or that those with MS get). And it pisses me off, that so many lesbians worked so hard on behalf of men with AIDS, fought the battle side by side for many years, but the men do not return the favour for lesbians with ME and other immune diseases, in which community they are rife.

And PWA's (the people I know in this community anyway) are just as likely to look upon me as crazy as anyone else <sigh>. You'd think they'd get it, but no.

Aylwin, M.E. patient 20+ years (Canada)

 

I actually walked away from mainstream medical care about 15 yrs ago out of utter frustration. Now I am having another "go" just to try and obtain any help that might be had. And my perception is that it's worse now. And my patience is running out. again. I almost wish I could be MISdiagnosed with MS or other, more respected disease, just to get better treatment.

Aylwin, M.E. patient 20+ years

 

I had those same "bright matter hyperintensities" in my MRI that we know are part of M.E.…but they were considered ‘insignificant’ because of having this silly disease, even though they are virtually identical to the ones seen in MS and other neurological conditions.

Aylwin, M.E. patient 20+ years



Hate to say it, but the only folks I know who have MS worse than we have ME are two women with the galloping progressive rapid kind, who are in wheelchairs & care, but they won't live much longer. But everyone else I've ever known with MS can run circles around me!! No offense to anybody, I have known people with MS, Lupus, Lyme, AIDS (not just asymptomatic HIV) and all kinds of other similar conditions, and to a one they can all run circles around me...until it's time to die that is. (Then they are more disabled than us, but only then). <sigh>.

Aylwin, M.E. patient 20+ years

 

To go from a MS diagnosis to a M.E. one is…illuminating (and not in a good way)! Doctors are supposed to be scientific, but it seems instead very often how they treat you is based upon ‘belief’ and seeing only what they expect to see based on what they have read. That is a big problem when a lot of vested interest groups have BOUGHT medical journals and compromised their integrity in way that suits their own interest and has nothing to do with science. When will the medical profession wake up to this?

All the abnormal tests results accepted as a cause of my problems when I had MS suddenly became invisible when I was a M.E. patient. My brain lesions on MRI were suddenly now ‘unimportant’ as were my grossly abnormal immune system tests, which were explained away as ‘being caused by an transient virus’ even though they’d been the same for many years and are well documented as occurring in M.E. (Services were withdrawn too, even though the level of illness remained unchanged.) What’s that saying…there are none so blind as those who refuse to see?

MS and M.E. are similar enough with symptoms and test results that M.E. could have in the past been classified as one of the subgroups of MS, if only it had there would be a lot less suffering in the world.

M.E. patient

 

My mum is starting chemo again after having lymphoma on and off for 25 years. They found a heart condition after 14 years of funny turns and she has a pacemaker now. She is 78 in Sept. She has a lot of ME type symptoms but can run rings around me ability-wise.

Victoria, severe M.E. patient

 

All I got from friends and family when I was ill and for the first 10 years was nasty comment and jokes and put-downs at my expense. They believed every piece of crap in the media about my disease, never mind how obviously poorly-constructed and illogical it was. No amount of evidence I had was ever enough, no matter how profound my test abnormalities. It wasn’t even looked at, they had made their minds up. It has taken 5 years for me to even get a few kind words and basic acceptance that I am severely ill, and that it is through no fault of my own and not something I can ‘positive think’ away.

Lots with MS can work part-time still, while I am bedbound and housebound and haven’t been able to work for 10 years and may never be able to again.

MS and M.E. are very similar diseases, but only scientifically. The way people react to each of them is so different, and not for any good or scientific reason. I wish I had MS.

Severe M.E. patient



Going from healthy to very ill overnight, and losing just about everything so quickly, is a real shock. The severity of the symptoms, the high level of constant suffering was really hard to deal with. But I don’t even have the words for how…devastating at a core level, at the level of who you are, your core being; to become so severely ill suddenly, and through nothing you did and to just…be ridiculed for it, and disbelieved and not helped. When people very close to you accuse you of ‘making up’ your disability to ‘get attention’ …when doctors talk to you are if you were just dirt, just lying morally-bankrupt scum not worth even a second of their time or consideration, refuse you the tests and so on you need and only tell you that if you want to do things again you should ‘just do them’ and if you don’t you are obviously ‘choosing’ to be ill….it is so just, traumatic and unfair, it kills something inside of you. It is just inhuman to treat anyone that way, let alone those who are so ill…who just happened to be unlucky enough to collide with the wrong virus one day.

Things are much better now, but for the first 7 years I was ill, not one person had a kind word for me. Not one, not one friend or doctor or family member. I had no support at all, emotional or physical. My family gave me a food and roof over my head but that was all. I remember being so ill, bedbound and going in and out of consciousness, having blackouts, seizures and terrible vertigo, and just being so desperate. I remember patting my cat who was sleeping on my bed at the time, and I remember thinking, this is it. This cat is the only one I have on my side…. It makes me cry now just writing that. It’s hard even thinking about that dark, dark time. A dark time that just would not have happened if I’d had MS instead.

If my disease had been called MS, I know for sure this would have been completely different, even if I were far less ill and disabled. It would have changed everything. We are too ill to do anything, let alone fight such a huge battle ourselves.

J, severe M.E. patient

 

I have had MS for 10 years and I have been amazed by the similarities to people I know with ME and I fully sympathise with the issues regarding the different attitude of the public and professionals to the two illnesses and about the different levels of support that are available.

In a way I think it is easier that people with MS are not expected to get better. Over time I have come to terms with the gradual deterioration and I don't look for "cures", etc. and although it can be annoying when people constantly TELL me that I look well, and therefore assume I have no symptoms at that time, I think it must be much worse for ME sufferers to have so many people expect them to get better and to keep asking them about their progress.

Thank you for the article and I wish everyone with MS or ME the courage to deal with each day.

Pam, MS patient (Guestbook entry)

 

I don't think there actually are any other disease-sufferers getting as little help as we do. And yet there are very few diseases (if any), which impact, destroy and restrict your life and ability to function as much as ME does. I would not get any caregiver hours or assistive devices either, if it was not for the fact that I also have a connective tissue disorder called the Ehlers-Danlos syndrome (EDS). EDS is not the actual reason for my disability and need of help. The reason for me needing help and being so sick and disable is ME. But with "only" ME I would not get ANY kind of help. Regardless of the fact that I would not stay alive without any caregiver hours.

M, severe M.E. sufferer

 

To submit a relevant quote, please go to The HFME guestbook 

A one-page summary of the facts of M.E.

Copyright © Jodi Bassett, January 2009. This version updated May 2009. From www.hfme.org                            

  • Myalgic Encephalomyelitis is a disabling neurological disease that is very similar to multiple sclerosis (M.S.) and poliomyelitis (polio). Earlier names for M.E. were ‘atypical multiple sclerosis’ and ‘atypical polio.’

  • Myalgic Encephalomyelitis is a neurological disease characterised by scientifically measurable post-encephalitic damage to the brain stem. This is always damaged in M.E., hence the name M.E. The term M.E. was coined in 1956 and means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation.  This neurological damage has been confirmed in autopsies of M.E. patients.

  • Myalgic Encephalomyelitis has been recognised by the World Health Organisation’s International Classification of Diseases since 1969 as a distinct organic neurological disease with the ICD code G.93.3.

  • Myalgic Encephalomyelitis is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, endocrinological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. affects all vital bodily systems and causes an inability to maintain bodily homeostasis. More than 64 individual symptoms of M.E. have been scientifically documented.

  • Myalgic Encephalomyelitis is an acute (sudden) onset, infectious neurological disease caused by a virus (a virus with a 4-7 day incubation period). M.E. occurs in epidemics as well as sporadically and over 60 M.E. outbreaks have been recorded worldwide since 1934. There is ample evidence that M.E. is caused by the same type of virus that causes polio; an enterovirus.

  • Myalgic Encephalomyelitis can be more disabling than MS or polio, and many other serious diseases. M.E. is one of the most disabling diseases there is. More than 30% of M.E. patients are housebound, wheelchair-reliant and/or bedbound and are severely limited with even basic movement and communication.

  • Why are Myalgic Encephalomyelitis patients so severely and uniquely disabled? For a person to stay alive, the heart must pump a certain base-level amount of blood. Every time a person is active, this increases the amount of blood the heart needs to pump. Every movement made or second spent upright, every word spoken, every thought thought, every word read or noise heard requires that more blood must be pumped by the heart.
         However, the hearts of M.E. patients only pump barely pump enough blood for them to stay alive. Their circulating blood volume is reduced by up to 50%. Thus M.E. patients are severely limited in physical, cognitive and orthostatic (being upright) exertion and sensory input.
         This problem of reduced circulating blood volume, leading to cardiac insufficiency, is why every brief period spent walking or sitting, every conversation and every exposure to light or noise can affect M.E. patients so profoundly. Seemingly minor 'activities' can cause significantly increased symptom severity and/or disability (often with a 48-72 hour delay in onset), prolonged relapse lasting months, years or longer, permanent bodily damage (eg. heart damage or organ failure), disease progression or death.
         If activity levels exceed cardiac output by even 1%, death occurs. Thus the activity levels of M.E. patients must remain strictly within the limits of their reduced cardiac output just in order for them to stay alive.
         M.E. patients who are able to rest appropriately and avoid severe or prolonged overexertion have repeatedly been shown to have the most positive long-term prognosis.

  • Myalgic Encephalomyelitis is a testable and scientifically measurable disease with several unique features that is not difficult to diagnose (within just a few weeks of onset) using a series of objective tests (eg. MRI and SPECT brain scans). Abnormalities are also visible on physical exam in M.E.

  • Myalgic Encephalomyelitis is a long-term/lifelong neurological disease that affects more than a million adults and children worldwide. In some cases M.E. is fatal. (Causes of death in M.E. include heart failure.)

For more information, and to read a fully-referenced version of this text compiled using information from the world’s leading M.E. experts, please see: What is M.E.? Extra extended version. Permission is given for this unedited document to be freely redistributed. Please redistribute this text widely.

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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."

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