What would I say to others about the M.E community?
Myalgic Encephalomyelitis is a highly disabling disease. No matter how fit your body: if there's no fuel, you aren't going anywhere. Worse, M.E is a finger-trap: Post Exertional Malaise means the harder you try to extract yourself, the tighter M.E grabs a hold of you. Worse still, the stigma attached to M.E is often as disabling and painful as the disease itself. Society has essentially doubled the awfulness of having M.E.
M.E patients are not "extremists" nor are their complaints about medical mistreatment unjust. Medicine is not simply 'harassed' by a vocal minority, it is firmly challenged by thousands of patients who request the scientific method be adhered to, and fair treatment and funding be allocated. I have found M.E patients to be no more prejudiced against mental health issues than the wider population and am alarmed whenever physicians seek to publicly brand patients in such ways, seemingly without regard to the psychosocial burden their action imposes.
Mainstream treatment for M.E has been founded on formalised denial of symptoms, with an attempt to use behavioural changes to manage the condition. Unfortunately, these behaviour changes were selected to be in direct opposition to the primary symptom (Post Exertional Malaise) and therefore often challenged patients' pre-existing coping behaviours. Many have reported that such treatment has resulted in them becoming more unwell. Further the large-scale science supporting this approach has been shown to be almost perfectly flawed. The M.E community is therefore, naturally, intensely keen to address mistreatment from the medical profession.
The M.E community is however, less keen to address its own failings. Advocates pursue conflicting aims, and can be simultaneously, supportive and destructive, kind and abusive, and helpful and obstructive towards one another. A busy looking, yet unproductive, dynamic equilibrium can be formed where charities, advocates & physicians seek to maintain cognitive dissonance indefinitely as opposed to making firm choices that may, in the short term, cost them political support. The M.E community is highly conflicted on many levels and this is probably a major reason why real progress, if it exists, is so very slow.
For good reason M.E patients are desperate for scientific research, funding, social position, and credibility. To my eye, however, many have an alarming tendency to submit to anyone who promises such things. No matter how badly they are mistreated, these advocates aggressively defend their right to choose this approach. Many see it as "pragmatism". They do not wish to challenge "how the world works" even though, demonstrably, the world hasn't worked for them for over three decades. I have come to believe many do not wish to set things right, only to win, and to win using the very same behaviour that they themselves have been subjected to.
The M.E community currently allows bullying. As an absolute priority community members need to care for and to stand up for each other. I tried to demonstrate how to do this. It is as simple as standing by people who are attacked, talking about the issue in public, challenging misbehaviour directly, and dealing with the resulting flack. I made a case against tolerating abuse but overall the M.E community responded silently. This is about the worst response one could have because it suggests advocates cannot justify their action and inaction ...but are going to carry on regardless. As an advocate, indifference, lack of care and inconsistent support are personally very hard to deal with. Indeed, as I write (Aug 2016) the M.E community is allowing yet another dedicated M.E advocate to slip through their fingers almost unnoticed. (I am not referring to myself, though I too left M.E advocacy recently (see below).)
The coils of the Boa constrictor of M.E exist not simply within the body but outside within society, medical profession and even the M.E community itself. The M.E community needs to understand the problem here is not simply a lack of awareness, scientific research and funding. There is an active, overt and covert, disrespect towards people with M.E and it must be challenged head on whenever and wherever it is found. Progress could be made, but first, the M.E community would need to find the gumption to pause their outward struggle and take a hard look in the mirror.
@batteredoldbook
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PWME - Line in the sand.
Over 4 years I have tried to give people with M.E (#pwme) an armoury of words to defend themselves from prejudice and disrespect. However, I have found advocating for fair treatment for M.E patients to be damaging to my health.
I report harm.
I have found the pleasant façade of M.E community advocacy and amiability conceals an unsafe structure behind. At the lower end, the M.E community accepts charities, researchers and doctors who block, equivocate or reply to communications selectively or not at all. Upon this simple disrespect is founded acceptance of advocates who respond to disagreement with public and private name-calling. Finally, and outrageously, the M.E community now tolerates the behaviour of a champion who threatens, and is abusive towards people with M.E. I'm deeply concerned by the M.E community’s inaction, silence, tolerance, minimisation and even advocacy for the continuation of such behaviour.
People with M.E cannot demand change in others while imagining themselves immune to criticism and challenge. This bias is exactly what makes behavioural medicine capable of such harm. I have tried hard to behave well and strongly believe respectful behaviour is the foundation of all endeavours within M.E research and advocacy. Our behaviour can and must rise above that of the worst of the medical profession. But as yet, it does not, so now, with sadness, I draw a line between the M.E community and myself.
I deserve fair treatment and I will not accept threats and abuse. I will advocate for #pwme again when, and only when, abusive and threatening behaviour has been kicked out of the M.E community.
@batteredoldbook.
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6 min vlog on my feelings about leaving M.E advocacy here:
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Summary of the summary:
"Don't accept mistreatment and don't mistreat others".
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Important to go out on a "joke".
What did Myalgic Encephalomyelitis say when we kicked its ass?
"This is the end of M.E!!"
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batteredoldbook@gmail.com
PS.
I met with a group of people with M.E: It was obvious they were ill and that they needed support. The reason they didn't get it is absolutely remarkable.