INTRODUCTORY NOTICE TO CFS/ME and FM PATIENTS AND THEIR CARERS IN WALES
The nature of this site requires that we inadvertently declare the existence of two North Wales NHS CFS/ME Clinics that have been operating here for ten years. It should be stated from the outset that those supporting this site and contributing to it in no way condone the Clinics, their methods or psychological rational for treating our patients.
It is our advice and experience that persons being newly referred to either of the North Wales CFS/ME Clinics, at Connah’s Quay Flintshire or Eryri Hospital Caernarfon, or the Bronllys Hospital Service in Powys, should shun any such offer. Those who have already attended, and that is hundreds by now, should review the advice they were given if, like many, they have not already done so.
Although there has been active challenge in many ways to the continuance of the North Wales CFS/ME Service, from within just weeks of its commencement, including fronts-page Newspapers locally, this site is the first direct WARNING ever, in an electronic and universal Internet form, to patients and their carers across Wales. Evaluate the facts, the history, and experience of others first before subscribing to CBT/GET therapy for CFS/ME and FM in Wales.
Those who read these pages and already have had experience at the Clinics are also very welcome to contact us in private.
N WALES ME/CFS FM RESEARCH FORUM
The meeting held on the 27th March in Bangor North Wales was very well attended and we will report back on that at a later date. Everyone said they found it very useful.
Meantime we have posted the current item to CO-CURE:
XMRV – De-conditioned and Affirmation Therapy
The WPI and the Japanese study details, along with some other interesting trends to come, are certainly very interesting.
I think it might really be about time we were now asking the UK CBT/GET Clinics if it is OK, in their opinion, that their ‘de-conditioned’ and behaviorally readjusted patients, or the ‘affirmationally cured’ Lightning Process fraternity clients, are therefore clear to donate blood?
And what, by the way, if it hasn’t been during all this time and for all that expenditure?
Karl Krysko 10mar-apr
North Wales UK Research Forum
BCU - N WALES
ME/FM and Neurological Questions -
to the new BCU Health Board Planning Director.
On Tuesday 10mar09 the Long Term Health and Chronic Condition Alliance conducted a meeting in the main Board Room of the Ysbyty Gwynedd, Bangor. A presentation by invitation was given by Neil Bradshaw, Director of Planning for the Betsi Cadwalader University (BCU) Health Board. The aim is a unified super trust health service across North Wales, named after a Welsh nurse from Bala who served in the Crimean War. There will be a merging of the existing NHS trusts and corresponding LHBs to simplify the NHS structure in the area.
Among many other items, Neil pointed out that part of the intention of the new service is to ‘stop wasteful clinical interventions’ as one of its 14 new principle objectives. As former Chair of the Alliance, and representing ME/CFS FM patients in N Wales at the meeting, I asked ‘if that would include the secession of psychological clinical interventions like CBT/GET for our patients in N Wales, for a medical condition that is designated as Neurological by the World Health Organization?’ His response suggested that if such interventions were found to be wasteful, they would be subject to the intentions of item 14.
Later in Question time, I noted to Neil and the meeting that the Welsh Neurological Alliance (WNA) of which again I was a founding member, had for the last ten years bemoaned the fact that neurological services in Wales were the worst in all Europe. While his presentation had specified several key health ‘genera’ among eleven Clinical Programming Groups he had listed, such as Cancer, Mental Health, Radiology, Pain and so on, I stated that ‘there had been no mention of the ongoing problematic Neurological provision for Welsh patients, though ‘stroke’ alone had been mentioned in passing just once, a condition some might regard as vascular anyway,’ in the two hour meeting. He responded that the list had not mentioned several other key health areas such as Cardio-vascular, but Neil failed to address the concern that I had illustrated noting that ‘such a stroke victim in Holyhead, for example, faced a 100 mile plus rush to the best nearest neurological center, at Walton Hospital near Liverpool, for supposedly urgent assessment and treatment.’
It seems the new BCU has no current plans to directly address the shocking lack of provision for neurological (including ME/FM) patients here in Wales. For those who think that going into England for treatment is at least some compensation, the English neurological service provision is the second worse in Europe.
Karl
