ME campaigners or serial intimidators and abusers of ME patients?
By Stephen Ralph DCR(R) Retired
15th January 2005
Well, in the last few days I have been dismayed and angered that the One Click Group have seen fit to repeatedly attack Margaret Williams. If you want to read their vacuous vitriol on Margaret and others you can read enough to keep you jaw dropping with incredulity for many hours.
In making these attacks the One Click Group have factually and repeatedly lied to and misled their readers and for the record Margaret Williams has put out a short piece just to rebut the inaccurate claims they have made - just for the record - just in case people actually believe the One Click Group.
Margaret Williams deserves NONE of this and neither does anyone else who finds themselves campaigning and living with the various debilitating symptoms that go together to make severe Myalgic Encephalomyelitis.
In the past months it seems to have become more and more apparent that the One Click Group use people like pieces of chewing gum in that they use them to get whatever they can out of them and then spit them out and step on them when they have finished with them.
This is exactly what the One Click Group have done to Margaret Williams and others including Doris Jones.
As things appear, everyone I know in campaigning is now too frightened to say anything that might dare criticise what the One Click Group says no matter how inaccurate or damaging that might be to the cause of campaigning itself.
I think it would be true to say that the One Click Group has few if any friends. In the campaigning world that I know there is not one person back channel who will give the One Click Group the time of day.
There is not one independent UK ME Group who will have anything to do with the One Click Group because of they way they conduct themselves and the way they treat people - casually and extensively abusing people who do not say "how high" when the One Click Group says "JUMP".
To me this is no surprise when the One Click Group think that it is perfectly acceptable to e-mail ME suffers with a barrage of abuse, threats and false accusations. And then when they've done this in private to intimidate them they then throw it up on the front page of their website with yet more abuse, threats and false unsubstantiated accusations.
When I came into campaigning in 1998 there was none of this unwanted bile and hatred towards people who are actually very disabled.
We have to remember that the people who run the One Click Group are not themselves people living and suffering with Myalgic Encephalomyelitis and so it makes it even more offensive that these people seem to get some sort of sadistic kick out of attacking anyone they see fit to attack without ANY consideration for those individuals states of considerable ill health.
Let us not forget that the idea of campaigning is to fight to represent the issues that affect people who are very ill and disabled.
It seems to me that one of the issues that has now come to light is the savaging of people with ME by self appointed crusaders who allege that they are in fact the only people good enough at representing the best interests of the ME community world-wide.
The question I have is this - do the best interests of the ME community include those self proclaimed people who think nothing of verbally savaging, abusing, upsetting, chewing up, spitting out and treading on members of the ME community just because they dare to share a different view that does not immediately and subserviently accord with the agenda of constructive chaos orchestrated by the One Click Group?
What appears to be happening is this, campaigners who are also patients and who have more than proven themselves over the last two decades are being forced to stay quiet for fear that they might be the next to be attacked, vilified, misrepresented and verbally assaulted via the Internet.
If this carries on, the natural
conclusion will be that the only people left before the last person throws in
the towel and turns off the light of
independent campaigning will be the One Click Group because after all, people who are living with chronic ill health can only take so much abuse before they decide to give up and close whatever organisations they have spent years of hard work establishing.
Then we will be left with one ranting outfit bereft of any support of ANY organisation or individual left in existence be it RiME, the 25% Group, The Tymes Trust, MERGE, The MEACH Trust, Margaret Williams, Doris Jones, The Countess of Mar, Professor Malcolm Hooper, MEActionUK, the Help ME Circle, MERSC and many other independent support groups and individuals.
Who will check their facts or lack of them? Who will be left to point out that the One Click Group does not represent people with ME but instead the self interests of the One Click Group alone?
Or perhaps this is what it's all about i.e. destroying an imagined "opposition" leaving only the last remaining on top of the pile?
Over the space of a matter of months nearly all of the groups and individuals mentioned above will have gone through the same nasty and abusing experience of being chewed over, spat out and trodden on by the One Click Group if, that is, they choose to do anything the One Click Group finds displeasing to their own supremacist agenda.
When each person or group has suffered this inevitable fate - and when we've simply had enough of raising awareness - what will be left?
Well after staying quiet for along time - for refusing to comment on the One Click Group because I myself have felt in fear of being attacked; I for one am not going to be a passive victim of their bullying but as I've chosen to speak out to support those already subject to such abuse I now realise that I am probably be going to be the next on the list.
I have chosen to hit the wasps nest with a stick and in doing so the wasps will get angry as they have already shown that they so easily can.
I shall probably get stung as Tom Kindlon and Jan van Roijen and Margaret Williams and Doris Jones and others have gotten stung just for making an effort and just for pointing out some facts. And as I've already stated it does not matter that most of us who have been or who will be attacked by the One Click Group are in fact chronically sick and disabled people.
But the thing is, we can all be subject to this bullying and if none of us stand up to this One Click outfit then the bullies will win and they will get progressively worse when no one is left to reign them back - check their facts and correct them when they ARE wrong and yes folks some of the bile that has come out of this One Click Group in recent days has in fact been a bizarre work of fiction that should be more suited as a late entry for the Booker Prize.
In closing I would like to give thanks to all the intelligent right minded organisations and individuals truly working hard for us in the form of RiME, the 25% Group, The Tymes Trust, MERGE, The MEACH Trust, Margaret Williams, Doris Jones, The Countess of Mar, Professor Malcolm Hooper the Help ME Circle, MERSC, Gurli Bagnall, Dr John Greensmith, Connie Nelson and other decent coherent human beings.
It has been my experience that over the last 8 years of living with chronic ill health, those who do the best for our community are those who actually know what they are talking about and check their facts also they are those who live with and have first hand experience of living with Myalgic Encephalomyelitis.
We already know that over the last decade the two main charities Action for ME and the ME Association started failing us when they became organisations run by people who did not actually have first hand experiences of living with ME - without any understanding of what it is like to live with ME and what it is like to be attacked and serially abused by ANYONE who does not have ME themselves.
If the One Click Group had ANY respect or understanding of what it's like to be chronically ill with ME then quite simply they would NOT be acting as they are.
I personally find it so bizarre that the founders of the One Click Group claim to be carers for their children who have ME.
The thing is if the founders of the One Click Group do care for their children as they care about serially abusing their victims who are often people living with severe ME (and the subsequent disability that ME causes) then I for one would be very tempted to call in the authorities to investigate them.
I for one only hope that we will all turn our backs on the One Click Group so that when they do shout the only voices they hear will be their own.
Stephen Ralph DCR(R) Retired.
Founder of MEActionUK - It does exactly what it says on the tin.