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.

Invisible logic

Invisible logic: The mistreatment of M.E. patients does not occur because M.E. is supposedly ‘an invisible illness’ - This paper explains why M.E. is not an 'invisible' disease and why this false claim harms legitimate M.E. advocacy.

Invisible logic: The mistreatment of M.E. patients does not occur because M.E. is supposedly ‘an invisible illness’

Copyright © Jodi Bassett September 2013. From www.hfme.org

 

There seem to be more and more ‘Invisible Illness Awareness’ groups popping up online. But is this a good thing?

 

Although it seems at first like a positive change, I don’t think it is. Invisible illness awareness groups claim to support a subgroup of illnesses which are widely believed to have no visible signs. By creating a small subgroup of invisible illnesses doesn’t it promote the myth that most illnesses are visible?

 

If you look at what illnesses are encompassed by the invisible illness groups you will most often see listed illnesses and diseases that are not well accepted by the mainstream media or mainstream medicine. Almost entirely it focuses on conditions which are not accepted for political reasons and because of the involvement of vested interest groups in science.

 

Doesn’t promoting these illnesses as ‘invisible’ support the problematic notion that the reason patients with these particular conditions are not treated appropriately is because of some natural aspect or quality of the individual diseases listed?

 

The reason Multiple Chemical Sensitivity Syndrome (MCSS), for example, is not an accepted disease isn’t because of the specific type of damage it causes to the body and its particular pathology. It’s to do with chemical producing corporations protecting their profits and power by paying doctors to cast doubt on MCSS being a legitimate disease, and to tell terrible lies about MCSS patients and their motivations, and this being done with the cooperation of governments around the world who are also involved financially in this issue.

 

Saying that the particular visual qualities of an illness lead patients to being mistreated because the symptoms are ‘not visible enough’ absolves the vested interest groups involved of their responsibility in causing this problem. It is the opposite of activism because it shifts the blame for the problem onto the wrong target. In a way it could be said to be a type of victim blaming.

 

Many of the conditions listed as supposedly ‘invisible’ do in fact change the appearance of the patient in various ways. Many of us with one of these conditions do look quite ill, although not as ill as we actually are most often it’s true. But this is true of a vast many diseases from diabetes to cancer. To judge how ill anyone is based merely on their appearance isn’t a sensible thing to do.

 

Wouldn’t a far better message to get out there, and to reinforce, be to say:

 

1.  Many illnesses today are denied mainstream acceptance and appropriate treatment and respect for patients due to the involvement of vested interest groups in science and government policy. It is a huge problem. The system is very corrupt and needs to change.

 

2. Most often you can’t tell how ill someone is just by looking and patients will often not look as ill as they actually are. Making assumptions based on appearances can be very misleading. The best way to know how ill someone is and how disabled they are is to ask them.

 

3. Relapses of symptoms can be delayed with lots of different illnesses. It’s important to be aware that making assumptions of how able someone is to do things in their daily life just by looking at them do a particular task is not a good idea. A task may be possible for a person but either not very often, not without a long time resting beforehand, or not without a mild- serious relapse of symptoms afterwards. In some cases certain tasks may also lead to disease progression for the person. The best way to know how ill someone is and how disabled they are is to ask them.

 

 

Invisible illness advocacy groups kind of miss the point entirely of why some illness groups are denied basic rights and respect. By doing so they actually further marginalise patients and work to reinforce some of the harmful myths that are causing the problems in the first place. It isn’t helpful and in fact does a good job of adding extra support for the status quo. It’s anti-activism.

 

I’m also yet to see even one such group that doesn’t promote the myths about the non-diagnosis or wastebasket diagnosis of ‘Chronic Fatigue Syndrome’ or wrongly claim that Myalgic Encepahlomyelitis (M.E.)  is just another term for ‘CFS.’ The information given about particular diseases is almost always very superficial and unchallenging of myths as well. So the idea that such groups are offering awareness and education on diseases is also unsupportable.

 

It is possible that some people may visit one of these sites or pages and be educated that some diseases make people far more ill than they look and so be inspired for a while to be more understanding of the ill person in their life. But this could also be done in ways which don’t support other myths as well as a ‘blame the disease’ type of mentality, surely. As explained with the three points above.

 

I also think it is very possible that what many readers of these sites get out of them is not what is intended. Without telling people that some illnesses are denied respect and acceptability for reasons that have nothing to do with science and are in fact related to gross corruption and interference by financial vested interest groups many people will likely conclude that some illnesses are not accepted because there is a lack of physical evidence to support them. That these diseases really are ‘invisible’ and are less proven or less real in some way, and can not be verified with objective testing or have no measurable pathology. They likely come off as being run by people who aren’t as ill or disabled as those with ‘real’ illnesses, if they are ill at all, but who want to be treated that way anyway and have their minor symptoms taken very seriously, for whatever reason. People that have no proof at all that they are ill and are asking people to just take their word for it anyway – a pretty big ask that will set alarm bells ringing for some people.

 

The invisible illness concept doesn’t do us any favours as patients. Many of us put in this vague category do in fact have provable and testable diseases that are very bit as ‘real’ as all those far better known and well-established-decades-ago conditions. The problem is that the science related to our particular disease is ignored, not that it doesn’t exist. The invisible illness concept says our illnesses are listed there and facing prejudice because they are different physically from other well-known diseases. This is just a myth!

 

If we’re all to have even a ghost of a chance at real change (sorry, couldn’t resist..) and getting fair treatment we need to make sure we take part in real and intelligent activism, and not waste time on problematic and superficial ventures like invisible illness awareness groups. There is only so much activism oxygen to go around. We need to pick and choose who we offer support to wisely.

Quotes

‘I think it's a mistake to characterise a diverse group of illnesses in this way, and obviously all of us with M.E. (and those with MCS, for that matter) would dispute that those illnesses have no physical signs, and would object to being further marginalised as "invisible." I really don't want to contribute to an us-and-them mentality in which M.E. becomes the "alternative" diagnosis that is unrecognised by conventional medicine. I want people to understand that M.E. is historical, scientific, well-researched and well-established, and that's obviously the point of the HFME.’ Emma

 

‘I've also been noticing that advocates for more and more illnesses are calling them 'invisible', and thinking about how stupid this is. Yeah, way to get people to take your illness seriously.’ Ginny

More information

For more information on all aspects of M.E. please see the (fully referenced) What is M.E.? A historical, medical and political overview paper.

 

For more information on the political issues facing M.E. patients please see: M.E. vs MS: Similarities and differences and Who benefits from 'CFS' and 'ME/CFS'? and M.E.: The shocking disease.

 

Patients given a diagnosis of 'CFS' are advised to read the following papers: The misdiagnosis of CFS, Where to after a 'CFS' (mis)diagnosis? and Why the disease category of 'CFS' must be abandoned and Who benefits from 'CFS' and 'ME/CFS'?

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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