Where are the Strong Voices ? by Greg & Linda Crowhurst
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photo by Nutdanai Apikhomboonwaroot |
"Why are the UK patients’ support charities not
vigorously refuting the false reasoning of the
Wessely School about ME/CFS on every possible
occasion instead of colluding with it?"
vigorously refuting the false reasoning of the
Wessely School about ME/CFS on every possible
occasion instead of colluding with it?"
Margaret Williams Grey Information about ME/CFS
Help ME Circle 28th April 2011Where are the strong voices speaking up clearly for biomedical tests and treatments for ME ?
Where are the strong voices standing up for the separation of ME and CFS ?
Where ate the strong voices condemning the psychosocial clinics ?
Where are the strong voices suing the psychiatrists for misrepresentation , misinformation and academic misconduct ?
Where are the strong voices speaking out against euthanasia ?
Where are the strong voices condemning the CDC criteria and the CFS label ?
Can you find one Charity doing all these things ?
Can you find one Charity that makes people feel and believe that they are actually representing the truth of ME ?
It's one thing to live in the virtual world of the online ME community, but how many Charities are breaching the interface between the virtual world and the real world and how many Charities are actually making an impact upon policy ?
Whenever one conducts social research on any topic - benefits, politics, one rarely finds an article or an analysis by an ME Charity - it's the Scope's the MENCAP's, the MIND's that are speaking out
Anyone who really has ME knows they are being abused by the system . They know that none of the Charities are effectively speaking up and bringing about radical change .
They know there is too much complicity and compromise, not enough focus on the real suffering and the radical change that is needed.
They know there is very little understanding of the suffering of severe NE and how it could be alleviated .
Where are the articles in the newspapers and the journals that count ?
Where are the headlines?
Who cares ? Very few in reality . Activisim is so much more than being ill and speaking up; it is an ongoing battle of exhausting immensity that takes everything from you in the fight to try and gain a shred of truth out there in the real world.
A whole community may be speaking to itself but is hardly having an impact
There are not enough people saying the right things, doing the right things, challenging the institutions effectively enough holding seats of power to make a real difference
Perhaps what us needed is anew grass roots me movement really driven by people with me , not by people who do not even have ME speaking on their behalf .maybe no movement at all.
Perhaps the only way to be effective us to be an individual who dares to speak up and act .
Once you are enmeshed in a group you are compromised .
Does anyone have a clear vision of how to really make change happen ?
How many more decades do we have to be abused and compromised away ?
There may be a few voices speaking out, but it still feels as if we are getting nowhere, because we cannot break through the power-hold of the psychiatric lobby.
Which Charity is digging deep , to find the fundamental root cause of the inertia , the deliberate negation. and stagnation and change it ? Unless you get to the bottom you are never going to heal it.
All the time we compromise we dilute the outcomes and water down truth and hope.
It's uncomfortable to ask yourself :
Are you compromising ?
Are you challenging ?
Are you acting ?
....and if you are not, who have you given your power to to speak up on your behalf ?
Just because they are an ME Charity , it does not mean they are speaking up for you.
It's not enough to ask for an ME consultant, it is not enough to push for research, it is not enough to push for a clinic, it is not enough to hold a conference , unless you identify clearly who you are speaking for . All those things can be compromised away while seeming to be doing something.
The consultant's hands are tied if the systems and structures are not there to back him, if tests and treatments cannot be agreed or implemented.
Research can be compromised if you do not use the clinical criteria that will identify ME alone .
A clinic can be compromised if it is treating the wrong symptoms.
A conference can be compromised if you do not clarify the difference between ME and CFS..
It is not enough to say you represent ME if you are not addressing the needs symptoms and experience of the severe ME sufferer; that is how easy it is to compromise away the truth while creating the illusion you are doing something.
The time to honour ME is long overdue. Who can say they are ?
I can.
ReplyDeleteEvery post I have ever made is dedicated to the proposition that ME and CFS are the specific entities for which those terms were originally developed and applied.
ME is the Royal Free Disease.
CFS is the Raggedy Ann Disease.
Whether these entities are congruent should be determined by methodological comparison of immunological parameters.... and nothing else!
For as long as you keep insisting on this:
ReplyDelete"Where are the strong voices standing up for the separation of ME and CFS ?"
People will walk away.
It is the label 99% of UK patients and most in the US are stuck with. This 'diagnosis one-upmanship' is the root cause of the splits in our community.
While you make this a main plank of your campaign, you make more people walk away than support you.
It's certainly why I walked away, and I have years of experience in PR and media.
I don't believe it is ' diagnosis one-upmanship'but a battle for the truth.
ReplyDeleteIt may be the label that most of us are stuck with but you have to admit, it is the ultimate piss take!
Keep going Greg and Linda. You are speaking on behalf of thousands of people who are victims of Severe ME.I admire your guts and passion.
***note, this is not personally at Greg, it's just the point at which I couldn't hear another word on this without making a stand. So, if you're in the ME campaigning community, read on***
ReplyDeleteThe problem is, ME isn't one disease. Yes, there are lots of people lumped into the 'CFS' dustbin who have other conditions which have been misdiagnosed. I don't argue with that.
But, consider this for a minute.
What if you removed all those misdiagnosed people and you only kept in the pool everyone who fits exactly the CCC criteria. You would agree that these people have ME, yes?
And that's where the problems begin.
Because a large chunk of the campaign community is going around saying things like (and these are real quotes) "CFS is a mental disorder" and "XMRV is the only game in town when it comes to cause".
These messages are highly inappropriate if you want to keep people onside, vocally supporting you and making this cause strong.
Firstly, XMRV is NOT the only game in town.
Enteroviruses and the herpes viruses actually have stronger science to back them up as causes of ME at this point than XMRV does. (This is where I hear a heckle from the back: 'but if you just have a herpes virus, then it's not real ME!' Really? Because, it seems to me you need to make your mind up.
If you fit within the CCC, you have ME, yes? But if you fit within the CCC and your ME started with Glandular Fever/Mono, that's not really ME?
Can you see where I'm coming from on this?
First you want everyone who has been told by their doctor or specialist they have CFS, and who a) knows what the CCC is, and then b) doesn't fit exactly within it to go away, so you only have pure ME sufferers in the pool.
Then you have a whole bunch of mixed messages about causation so that people really don't know if they have ME or CFS ('a mental disorder', mind) or something else.
And you want them (whoever is left after all this messing about) to stand up and be vocal.
Can you see something wrong with this picture?
All I'm saying is, the NAMING issue might not be the biggest priority at this time.
The CRITERIA issue - and the decisions within the patient community about who's in and who's not, and how to get this communicated to the medical community - needs to be sorted out if you really want people's support.
And then the MESSAGING and AUDIENCES for those messages needs to be set up clearly, so we know which messages are going to which audience without equivocation.
Otherwise, we're just standing in the middle of a field shouting 'help!'
Again, my apologies to Greg. But I can take no more of the double standards currently operating in this community.