A Call for Help from the ME community
2nd March 2005
(permission to repost)
Occasionally something happens that could really do with the help of the members of MEActionUK.
As some of you will already know, it was recently revealed that adverts are now being placed for staff to work in the new network of 12 "CFS/ME" "Fatigue" Clinics across England.
These adverts are a chilling read for anyone with ME and you can read them by visiting this link...
As you will see each job description relates to a post in two different NHS trusts in two different areas of the UK.
There has been a wholly negative reaction to these job descriptions and indeed Action for ME has put out an apology from one of the NHS Trusts involved via the Co Cure mailing list. You can read that apology below...
However, it was pointed out this afternoon that the mailing list called IMEGA-e - supported by Action for ME and the MEA (and used to supply accredited information to 130 AfME/MEA affiliated support groups countrywide) has been behaving less than transparently with regards to this important issue.
As I understand it, a group leader and member of IMEGA-e posted these adverts to the list and there was short response from Dr Charles Shepherd saying that the details of these adverts had already been drawn to the attention of the ME Alliance. Dr Shepherd also stated that he found the wording "deeply offensive".
If that member or any other member of IMEGA-e hadn't posted these adverts to their group then it is believed that these job adverts would not have been posted by Colin Barton or Chris Clark.
There then followed two formal responses to the adverse reactions to these adverts from Dr Nye and Action for ME but these responses including the superficial and far from comprehensive apology from Dr Nye appeared only on the Co Cure mailing list.
These responses were not posted to IMEGA-e by either Chris Clark or Colin Barton. To get them to appear on IMEGA-e (that has 130 local ME groups affiliated to it) a member of IMEGA-e had to repost the responses from Co Cure.
This in itself is quite disturbing because it is usually the case that Colin Barton and Chris Clark fall over each other trying to post news favourable to their cause onto IMEGA-e without any delay.
(If you are new to all this then Colin Barton runs IMEGA-e and does the bidding of Chris Clark/Action for ME and the ME Association. One can only conclude that when there is bad news around they simply do not want their IMEGA-e members to know.)
The bottom line is that this network of clinics is nothing more than a network of mental health centres specialising in behavioural modification based on the conclusion and assumption of the people running them and before you walk through the door that the symptoms of ME exist purely because of faulty beliefs about your illness.
As you will see from these adverts it is assumed that people with ME will have mental health issues including sexual problems, aggressive behaviour and cognitive existence to accepting that your behaviour is the cause of your many physical symptoms.
I believe that it is so very important that as many support as possible should know that Action for ME, IMEGA-e and the MEA are actively preventing them from knowing about this.
So, to redress this I would like to inform as many groups as is possible about these recent developments and if possible I wondered if you as a member of MEActionUK could possibly spread the word about what is going on to your local support group.
We cannot let them get away with what they are doing.
We cannot let these clinics treat as though we are simply maladjusted mentally ill individuals who simply need some Cognitive Behavioural Therapy and Graded Exercise to (in their minds) make us better.
It is clear that these new clinics will not be offering anything else to people with ME.
The mindset of these clinics is such that they simply not interested in screening you as a patient for possible active viruses such as HHV6 or treating you for such ongoing viral infections. As we know people with ME are often suffering from chronic infections that are going uninvestgiated and untreated.
They will not be interested in looking at neurological damage by offering you PET or MRI head scans - scans that have shown abnormalities in people with ME who have gone private.
They will not be offering you tilt table testing to see if you are suffering from Neurally Mediated Hypotension yet people with ME who are going private are finding out that they do have this condition.
These clinics are not interested in any of this because these clinics are being set up purely to deal with issues of mental health or rather mental illness that you are presumed to have acquired since you initially became ill.
These beliefs held by these clinics are all beliefs held by the psychiatrists driving this process through and include Professor Simon Wessely, Michael Sharpe and Peter White.
These beliefs are all being actively pursued and supported by Action for ME and to my knowledge the ME Association who are supporting this ongoing process.
So, if you are unable to help by spreading the word about these new clinics then I would like to do so myself.
If you have a contact address of a local support group that you are unable to contact yourself then I would like to let them know just how they are being mislead by the leading ME charities.
By all means drop me the addresses you have to me privately by clicking here to send me an e-mail.
We cannot let these people get away with this.
We cannot let these clinics be hijacked by the mindset of psychiatry who plan to spread their word and their beliefs through these clinics to the families of ME sufferers and the wider communities who will go to these clinics for advice as will your GP's and the media once these clinics have been set up with staff who will be educated by such adverts and the people who wrote them along with their managers who are all forcing through this mental health agenda.
I think this whole situation is totally appalling.
Over the last decade I have read much of the research evidence that confirms the view that there are most certainly multi-system dysfunctions that go together to cause the disabilities that define WHO G93.3 Myalgic Encephalomyelitis. I am more than sure that people with true G93.3 ME are not in any way mentally ill.
Furthermore, there is enough evidence available to prove that people who are severely ill with ME are NOT perpetuating their states of ill health by faulty illness beliefs.
The fact is that such evidence is being stonewalled by the profession of psychiatry who are in turn being supported by the MRC who have a chief executive that readily compares ME to depression....
We have a psychiatric agenda being driven through by Chris Clark of Action for ME and their medical director Professor Pinching (who are simply following whatever the psychiatrists say) and in doing so are failing to represent G93.3 Myalgic Encephalomyelitis or the research needs of the ME community outside of the disturbing world of the "Wessely School" psychiatrists pulling the strings.
In my view people with ME are simply not being served by this ongoing psychiatric agenda that has nothing else to offer people with ME than CBT and Graded Exercise.
If you can help then I urge you all to do what you can.
This affects us all because one day you will be invited to be a part of one of these clinics and you will be put through 2-3 hour sessions of Cognitive Behavioural Therapy as described in these job adverts.
You will be pestered with one hour phone calls (as described in these job adverts) persuading you to do more than you feel able to and to "get out more" and to change your beliefs of why you are suffering your pain, cognitive dysfunction and all your other symptoms.
This will be nothing more than an elaborate attempt at brain washing by people who will think (due to the training that they will be given) that you are in some way mentally ill.
I am not trying to misinform you with this - this is what is going to happen and what is happening right now.
Forewarned is forearmed.
Stephen Ralph DCR(R) Retired.
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