OUR CALL FOR STOPPING RESEARCH INTO PACE/FINE TRIALS AND REDIRECTING FUNDING INTO BIOMEDICAL RESEARCH IS JUSTIFIED!
FROM THE 25% ME GROUP
(Permission to repost/re-use)Many people will no doubt be aware that the 25% ME Group was one of the main charities to call for the cancellation of the PACE/FINE trials from the very onset.
The 25% ME Group remains the only ME charity specifically supporting severely affected sufferers of ME (ICD10: G93.3). As such, we represent the interests of severely ill ME patients, many of whom are so ill that they are totally bedridden, some of whom are wholly dependent on carers for the basic functions of daily living and others who are lucky enough to be able to leave home in a wheelchair occasionally!
In addition to calling for the cancellation of the PACE trials, we also called for the suspension of the FINE trials aimed directly at our client group (ie, the severely affected) using techniques wholly inappropriate to the house and bed bound sufferer.
This would also apply to any future funding into such trials!
Some members of the medical profession, especially those within the field of psychiatry, have consistently maintained that ME (Myalgic Encephalomyelitis) is not a neurological condition in spite of the fact that for almost fifty years it has been consistently reported to be a neurological condition. Well-respected medical professionals including Dr Richardson, Dr Ramsay, Dr Aitchinson, Dr Dowsett, along with many others, reported findings confirming this fact. As we all know, the World Health Organisation has also classified ME as a neurological disease which the government and the NHS also officially accept.
As many of you will be aware from the latest news concerning the tragic death of one of our members, Sophia Mirza, an Inquest was held on 13th June 2006, in Brighton Coroners Court, England and the cause of death was stated as:-
'The verdict was Acute aneuric renal failure due to dehydration arising as a result of CFS' At the Inquest the pathologist also stated: -
'ME describes inflammation of the spinal chord and muscles. My work supports the inflammation theory. There was inflammation in the basal root ganglia.' Pathologist, Dr. O’Donovan, also stated that Sophia probably died of dehydration, technically acute aneuric renal failure.
He also stated that dorsal root ganglionitis is a pathological condition. He said that psychiatrists were baffled by her illness but that
“It lies more in the realms of neurology than psychiatry, in my opinion.”Based on the latest findings and the fact that this condition is a neurological disease, we now call for and demand that central government funding is now released in order to fund the gene research studies currently being undertaken by Dr Kerr (at London) and Dr Gow (at Glasgow University). In addition, we also call for the vital research studies that have been conducted and funded by ME Research UK (formerly MERGE) to be allocated central government funding.
As mentioned above, there has been much reporting of inflammation in ME by many renowned scientists over the last fifty years, much of which has been dismissed out of hand by psychiatrists (who have a vested interest in denying the biological nature of the disease in favour of a psychiatric one). Now because of the definite and official findings from the case of Sophia Mirza, we also feel it is extremely important to development autopsy protocols to ensure tissues are retained and appropriately stored for future examination at major international ME/CFS research centres.
For too long, much of the medical profession, especially psychiatrists, have continued to denigrate patients with ME, even to the point of locking them up in secure psychiatric units (as also happened in Sophia's case) and have refused to acknowledge the overwhelming body of evidence from around the world that ME is a physiological disease. This must change!
Following the outcome and reported findings from the Inquest, in addition to the fact similar findings have been contained within medical journals at various times over the last fifty years, it is now time for funding bodies such as the MRC to seriously and urgently release funds for the research bodies as mentioned above.
In part of her summation at the Inquest, the Coroner said that Sophia had been an attractive and vigorous young woman until she was struck down by illness.
She suffered substantially and became extremely unwell and was effectively housebound and bed-ridden. Her Mother was her devoted carer.
Our thoughts and very best wishes are sent to Criona, Sophia's mother, who has tirelessly campaigned for recognition of her daughter's illness to be acknowledged as a serious neurological condition.
During this time we wish to relay our sincere sympathies and condolences to Criona for her loss and to wish her strength to continue in her campaign for justice and in her fight to assist others with this condition. To this end we, as a national support group for the severely affected, will continue (as we have done in the past) to support Criona to this end in any way we can!
For further information about ME, please contact:
The 25% ME Group, 21 Church Street, Troon, Ayrshire, KA10 6HT
Telephone: 01292-318611
Email: enquiry@25megroup.org
Website:
http://www.25megroup.org/
![[info]](http://l-stat.livejournal.com/img/userinfo.gif){kind=small}
disgruntled
excited
confused
worried
Christmasy!
sad