Discussion in 'General ME/CFS Discussion' started by charles shepherd, Sep 25, 2014.
New live film for our ME/CFS Biobank Appeal – could you become a sponsor today? | 25 September 2014
Our campaign to raise enough money to guarantee the future of the UK ME/CFS Biobank, which can collect blood samples from people with the severe form of the illness in their homes, moves forward today with the release of this 3-minute film.
£1 million grant for the UK ME Biobank from US National Institutes of Health:
I do not know if the clinic are involved in the blood bank in the same hospital, but the treatments offered in the Royal Free Hospital fatigue clinic absolutely horrify me. Astoundingly, they claim that resting longer and sleeping longer prolongs fatigue in an illness they sometimes call fatigue, sometimes chronic fatigue, sometimes chronic fatigue syndrome and sometimes ' Myalgic encephalitis' , whatever that is.
They make what appear to be completely unproven claims for graded exercise and cognitive behavioural therapy, and ignore the fact that many myalgic encephalomyelitis patients have been permanently harmed by graded exercise.
They competely ignore the fact that myalgic encephalomyelitis is classified as a neurological illness.
In my opinion, they would do far less harm and it would be every bit as scientific if they waved magic bones over the patients whilst chanting 'Jabberwocky' and dancing the cancan.
The ME Biobank is situated at the Royal Free Hospital in London because it forms part of the UCL (University College London) Biobank and this is where the UCL Biobank is situated.
If you want to discuss the ME/CFS service at the Royal Free Hospital, which I have no involvement with, I think it would be better to start a separate discussion.
Well I wouldn't want the doctors from that clinic getting hold of my blood or body tissues.
Since the Biobank will be situated at the Royal Free Hospital, which is part of the UCL, will Dr. Jo Cambridge and researchers part of her group have direct and preferential access to samples?
Will the Biobank collect only blood and plasma or other fluids, such as CSF?
Are there plans for collecting post mortem tissues and organs of PWME?
These questions might have been already answered, so please excuse me for asking them.
This looks interesting, but i'm unsure that due to the diagnostic criteria, if any answers will ever be found?
The best we can hope for is a subset of patients have X, Y, Z.
However, this does not prove that ME is caused by X,Y,Z, because ME frustratingly is referred to a CFS and due to heterogenous consequences of this, 'most' won't have X,Y,Z if they don't have ME!
Unfortunately, CFS or 'CFS/ME' (UK label) requires no biological abnormalities at time of diagnosis, or abnormal neurological signs. As the diagnosis (based on a hypothesis by Dr Melvin Ramsay) of ME is meant to describe a unique neurological disease, this biobank idea seems rather wasteful to collect 'unexplained chronic fatigue' blood, being none the wiser who has ME and who doesn't.
I wonder then, if time is better spent actually attempting to select ME sufferers first, and then do a bio-bank model on these 'likely ME patients'?
This would seem the logical thing to do, but to my knowledge, has never been done because of the 'chronic fatigue based' criteria in use in the medical profession. I would also imagine obtaining grant funding and using university facilities would then also be prevented if an 'ME' biobank was ever proposed due to medico politics and influence of certain people we know and love.
We have the best of a bad situation. I don't know if we should be satisfied though. I doubt any scientist would be. Sadly, this is the hallmark of CFS/ME biomedical research. Disinterest, because of the poor science, and the science if poor because of the criteria the CDC created and the UK espouses as adequate.
It seems bizarre that very sick patients and well meaning researchers are caught in a catch 22 scenario that interferes with good science research.
If this project allows researchers to do larger studies more cheaply, it might allow for work better suited at identifying sub-types?
The next phase of the ME Biobank, which is what this fundraising appeal is for, is to pay for the cost of assessing and processing applications from research groups who want to make use of blood samples from people with ME/CFS who have not only a diagnosis of ME/CFS that meets Fukuda and Canadian criteria but is also accompanied by a large amount of information relating to symptoms, examination fundings and laboratory results.
Dr Jo Cambridge and anyone else in the team at UCL will be able to apply for blood samples if she feels this would help with their preparatory work on the Rituximanb clinical trial. I am in fairly regular contact with Professor Jonathan Edwards and he is aware of the ME Biobank.
At present, the ME Biobank is only collecting blood samples. But we would like to extend this to cover other samples (such as cerebro-spinal fluid), 'live tissue' (eg muscle from when someone with ME/.CFS is having an operation) and post-mortem tissue.
As you are probably aware, several of us who are already involved with post-mortem research (CS included) are also heavily involved with the Biobank.
However, we just do not have the funds available to start setting up another vital piece of ME/CFS research infrastructure.
There are several reasons why we need an ME Biobank:
First is that this facility will provide rapid and easy access to blood samples for researchers who just want to do research using blood samples from very carefully assessed patients with ME/CFS
Second it will significantly reduce the cost of this type of research
Third it will help with defining clinical and pathological phenotypes that come under the ME/CFS umbrella
There are other reasons as well…..
I understand that we are now up to £9,000 in pledges
Dr Shepherd explained about the inclusion criteria on another thread about the biobank:
You can also try a Google Site Search
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