Stonebird

"..for let us carry on our work, even though it be no more than the work of an ant, infinitesimally small and with unforeseeable results. Now is the hour of the garden and the night..." Abbe Monchanin. (Living Simply in an Anxious World. Robert J Wicks Paulist Press 1998 p.47) Emails are flying , there's all kinds of discussions going on, outline papers are being written but what is not happening- and what needs to happen today or tomorrow at the latest- is the making of a firm decision. What is our stance to be ? Is it to carry on co-operating with the NHS , in the hope that at the end of the consultation process, if we stand firm, we will make a difference, for surely they, the NHS, have to listen to us and all those they consult with ? Or is it to say no ? No way, not another moment of this sham of a consultation exercise ? It is very difficult. Perhaps it all comes down to how we see things ? John O'Donohue points out how "limited and narrow lives...

Well, well : "..in our experience consultations are largely public relations exercises; the choice is often almost predetermined, uncertainty is presented as fact and there is a dearth of evidence made available which local people can consider in expressing their views. It is not surprising that the public often feel that NHS consultation is a sham... if there is consultation it should not be pseudo-consultation, with no proper regard for evidence or justification or a full evaluation of the options. The public are right to react against spin and should be treated as adults - able to balance clinical and financial arguments and able to say no." The Sham of NHS Consultation on Service Provision by Sean Boyle and Roger Steer : www.radstats.org.uk/no096/BoyleSteer96.pdf It's taken me all this time, all these months of thinking that maybe I was being listened to, that at last just maybe there is hope, to find out the hard facts of life as expressed above. So much unspeakabl...

For at least the last three years two world class ME clinicians have been willing and ready to step in and offer a biomedical service here ; all that time we have fought , we have demonstrated overwhelming need, by conducting in-depth surveys that show that the severely affected in particular receive no service whatsoever; we have got our local MPs fighting for us we have applied overwhelming pressure. To no avail. All we get from the NHS is a continual fudging of the issue. So my wife lies desperately ill day after day, year after year with absolutely nothing being done to investigate her illness or to try and treat her. We have no confidence , whatsoever, that the NHS has any intention of listening to us. People with ME , around the world, are subject to massive Institutional Prejudice - the most insidious and difficult to rectify of all prejudices, for it is not just about the NHS. Prejudice against people with ME resides now within the very fabric of society, because of the lie...

At who knows what cost, us carers and patients have thrown everything into an NHS "consultation" process, that quickly became clear was pre-determined from the start, in favor of a CBT/GET-based NICE service. Now the cards are on the table and we carers and patients must choose how to respond - do we continue to co-operate with the NHS or not ? If not, what do we do next ? These are momentous, difficult decisions that will have ramifications not just locally but for all people with ME. At last patients and carers are taking a stand against the insitutional neglect of this horrible disease. Following on from what I was exploring yesterday, I have been hugely uplifted this morning reading a passage on activism from Thomas Merton, who was a contemplative American monk. He advises : "struggle less and less for an idea and more and more for specific people...In the end it is the reality of personal relationships that saves everything." THIS is the key to ME activism. Do...

It has taken me a long time to realize how differently things are done here in the emotional and physical desert, where I find myself as a carer . If its ego, reputation, acknowledgment you are after, then here is the loneliest place , for your companions, other campaigners, patients, carers, if there are any, are scattered far and wide. In any case they are far too tired, far too overloaded, far too stressed to be that concerned about stroking your fragile ego. My brilliant contributions continually disappear into email limbo; there is only ever the all-pervasive silence of this place. You could go crazy. How frustrated I still get that we do not meet and plan a "strategy", that we have not collectively drawn up an "action plan". You know, what is our "mission statement" ? In another time, I used to teach these "management" strategies to struggling teams. But here is the learning : everything that is reckoned to be so essential in the ...

I presume, although I still do not know for certain, that this morning's meeting is not going ahead. No one has told me one way or the other. Those "organizing" this meeting are paid to do just that; that is their job. And when they sit around the table with us, "they" are all receiving a lot more money than most of "us". It is "us" though who have to deal every moment of every day and night with the screaming disease that is ME. My life is totally dominated by the person I care for being in constant pain and suffering from an overwhelming , never-ending galaxy of symptoms. This takes up all my time and often makes me very stressed indeed. So much so, that any additional stress, I take on, has to be weighed up very carefully indeed. I have chosen to enter into this struggle for a biomedical service; I accept and will try to deal with the cost as best I can. What I do not accept and find so maddening is the incompetence that I daily have...

Reflecting yesterday upon how the NHS wants us local campaigners to compromise, to sign up to a document that increasingly reflects the institutional bias towards ME patients, a document that includes CBT and GET and is becoming more and more NICE biased ; all of which is an outrage, especially considering the time a lot of us have been putting into this "Consultation" process. I was driving along and it hit me, so hard I punched the steering wheel : WE DESERVE MUCH MORE THAN THIS !!! We deserve the highest possible standards of honesty and transparency. We have invested so much into this process at who knows what cost, under the most appalling conditions , we deserve the most accurate outline of a proper biomedical, consultant led ME service that there has ever been. We have got this far because we have raised our standards to the highest possible level -for that is what ME patients and carers deserve and need so bad. In my mind there is no question of compromise. Ther...

There is much talk about the meaning of ME Advocacy and Activism at the moment from the likes of John Herd and Hillary Johnson . Their message is simple : we have lost the plot. I am not sure, though, we ever had it. If the big ME organizations have become so corrupted, if people's idea of advocacy is posting messages to and from each other on the internet, if oh, so viciously, so cleverly attacking every decent person who stands up and tries to make a difference, is taken to be acting politically, then we deserve what we have got. Who let the big ME organizations get so lazy and corrupt ? Who so lost sight of reality that they think that any of our postings make a button of difference ? Who has let the vicious fringe wreck so much destruction ? My wife has been severely ill for the last 16 years. In all that time I have seen chance after chance squandered, attacked, rubbished . I have seen the psychiatric lobby run rampage with their crazy theories, that should never ...