I did once respond with "Well I wouldn't be here if I was OK".
Petition: Opposing MEGA
- Thread starter AndyPR
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Jo Best
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Oh @JoanDublin that's awful. These accounts (and I've heard so many) make me so grateful for my own doctors, not that I've seen one in many years as I'm in that situation of nothing they can do really. My heart goes to you and your son. How anyone can countenance supporting research with Esther Crawley in a key role is beyond me.
Jo Best
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JoanDublin
Senior Member
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Thanks @Jo Best . I agree. At least I didnt have docs re-diagnosing him with spurious things like PAWS and other such rubbish though mind you I did have a psych say to me one day in a very accusatory tone that she 'wasnt happy' that he was so sick again. I said 'You and me both'. She then went on to say that perhaps I shouldnt carry a file around with me with his medical info in it.....I was keeping records of his symptoms, what he was eating, what he was doing, what medications he was taking, etc and faithfully brought this info to every hospital appointment - like any good parent would. (Bear in mind that he had a total bowel shutdown from the onset of his M.E., had been hospitalised on numerous occasions and had proven resistant to every medical treatment they were giving him).
But she was concerned about my file! Jesus wept. She managed to convey that I had some kind of 'over interest' in his illness and this is what was keeping him sick.
No never ever will I support any research where people like EC et al (who hold these false illness beliefs) are involved.
batteredoldbook
Senior Member
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- 147
Btw. MEGA aside; The same question can just as usefully be applied to NIH and other studies. The ability to discuss PACE is now the acid test for M.E research and researchers.
>Patients have expressed a reasonable doubt over whether UK
>medical research is following the scientific method.
>
>Let that sink in a moment. If your jaw's not on the floor then re-read it.
>
>On this basis I ask all researchers involved with the proposed
>MEGA study the fair question below. Further I ask all those
>involved in MEGA to ensure that each researcher
>has been made aware of it.
>
>"Is the PACE trial good science & can research
>& treatment be safely founded upon it?"
>
>@batteredoldbook
>16:27 27/10/2016
>Patients have expressed a reasonable doubt over whether UK
>medical research is following the scientific method.
>
>Let that sink in a moment. If your jaw's not on the floor then re-read it.
>
>On this basis I ask all researchers involved with the proposed
>MEGA study the fair question below. Further I ask all those
>involved in MEGA to ensure that each researcher
>has been made aware of it.
>
>"Is the PACE trial good science & can research
>& treatment be safely founded upon it?"
>
>@batteredoldbook
>16:27 27/10/2016
Let’s look at two of the researchers listed –
Routinely collected data – Prof Andrew Morris (Edinburgh)and Prof David Ford (Swansea)
With respect to Prof Andrew Morris From http://www.ed.ac.uk/profile/andrew-morris :
In his role as Chief Scientist at the Scottish Government Health Directorate, Andrew supports and promotes high quality research aimed at improving the quality and cost-effectiveness of services offered by NHS Scotland and securing lasting improvements to the health of the people of Scotland.
You have to worry when you see the word cost-effectiveness in relation to ME/MUS because the government’s Five Year Forward Plan (for Mental Health) is to save billions from NHS budgets by stopping investigations and referrals ME/MUS patients (for ANY symptoms) to secondary care, only offering CBT/psychotherapy instead.
With respect to Prof David Ford from http://www.swansea.ac.uk/staff/medicine/research/d.v.ford/#publications=is-expanded
David Ford is Professor of Health Informatics and leads the Health Informatics Group at College of Medicine in Swansea University, Wales, UK.
David is Director of the Administrative Data Research Centre (ADRC) Wales, an £8 million investment by the Economic and Social Research Council (ESRC) as part of its Big Data initiative and is Deputy Director of a the Centre for Improvement in Population Health through E-records Research (CIPHER), part of the Farr Institute of Health Informatics Research, funded by a consortium of top UK research funders led by the Medical Research Council (MRC).
David is also Director of the eHealth Industries Innovation (ehi2) Centre, developing links between academia, the NHS, and business within the UK and internationally. He is also University Director of NHS Wales Informatics Research Laboratories, created through a collaboration between the College of Medicine, Swansea University and NHS Wales Informatics Service, the national programme for NHS IT for Wales. The Research Laboratories provide state-of-the-art facilities to design, prototype, test and evaluate innovative new information technologies for use in improving health and healthcare.
David is joint lead of the Health Information Research Unit for Wales (HIRU), which develops new ways of harnessing the potential of routinely collected information collected in health and other settings. HIRU’s main product is the SAIL Databank, an internationally recognised data linkage resource formed from a wide variety of routinely collected data from across Wales.
He may be fine, but it's a little worrying to read about his deep involvement with E-records research given that a computer app called the Nottingham Tool has already been developed by MUS psychiatry researchers (including Prof Richard Morriss*) that can trawl through GP patient records and identify patients who have MUS (remember ME is now counted as MUS) to flag up these patients to other healthcare professionals so that they are not investigated or referred on for their presenting symptoms (all deemed neurotic/psychogenic). All very Orwellian I’m afraid. (NB The Institute of Psychiatry has its own links with an E-research facility - CRIS based at the South London and Maudsley NHS Foundation Trust.) As we know to our cost, not all researchers, not even Professors, (or especially not Professors), can be trusted to act in the interests of patients. Sometimes they’re just doing the government’s bidding for their own personal gain.
It may also only be co-incidental that in 2011 Ford was a fellow keynote speaker at ORAHS with Mansel Aylward, whose track record we're all familiar with. http://mathsevents.cf.ac.uk/orahs2011/speakers.html
* from http://impact.ref.ac.uk/casestudies2/refservice.svc/GetCaseStudyPDF/28021 "Morriss and colleagues conducted Department of Health (Care Services Improvement Partnership, CSIP) funded research investigating streamlined diagnosis of MUS by developing methods for estimating the number of patients suffering with MUS using electronic patient records held by practices5. With additional support of CSIP, Morriss developed a search tool ‘The Nottingham Tool’. This searches a GP Practice Database, to identify a cohort of patients that fulfil the criteria for MUS. This cohort provides an overview to the commissioners, or the practice, about the number of people likely to have a MUS. The tool is designed to generate a list for GPs of patients with possible MUS. The GP can then refine the list to exclude or include patients known to have the condition."
See also “Medically Unexplained Symptoms (MUS), Project implementation report, March 2011” – NHS Commissioning Support for London.
What sort of Tool would imagine MUS to be a "condition"? If this is the level of ignorance opposed to us there can be little hope.
JoanDublin
Senior Member
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- Dublin, Ireland
Oh my word......This is more and more worrying. I have the words of a song reverberating around my head all week "If you tolerate this, then your children will be next"
There is absolutely no way is this MEGA group 'independent' by any stretch of the imagination. I accept that everyone will have certain allegiances but to be so intrinsically linked to State cost saving applications is simply a recipe for disaster. I would plead with people not to support this MEGA project but to instead register your objection by signing the OMEGA petition. This is only a first step mind you. There is a fierce battle ahead and if we want to capitalise on the success of the PACE debunking we HAVE to follow through with showing our opposition to this disaster
If we choose to squander the advantage the ICO tribunal decision has given us then we effectively stick two fingers up to all those who advocated to reach that position. From Margaret Williams and Prof Hooper all the way through many, many patient advocates to Tuller and Matthees. Why, why, why would we want to hand the chicken coup back to the fox?
Cinders66
Senior Member
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- 494
I'm not comfortable Labelling those without clear fukuda cfs or ME as hyperchondriacs. I think medically unexplained symptoms and fatigue are just that and deserve biomedical research in their own right, not lumped in with ME research though as the brits cant bring thermselves to recognise our separate, more severe existance. I'm not yet convinced about supporting the uk establishment in what feels like to part prove to themselves that ME is neither cfs or CF & that the NICE umbrella lumping isn't helpful or endorsing them focusing on this to the exclusion of doing anything else proactive more specific to ME and Severe ME or even SEID. It still feels like they're saying we can't study ME in its own right yet.
Cinders66
Senior Member
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Reading through the CMRC meeting minutes, when MEGA, or the Grand Challenge was announced, applications for funding were supposed to be sent off by the end of this year, yet the meetings haven't established their plans on numbets/criteria, or perhaps they had they are just being vague now as they encounter patient criticism. Reading talks/minutes from over the years it seems recruitment via BACME clinicians and the fatigue clinics was seen as the way to go, with broad inclusivity of fatigue disorders talked of right from years back, 2009 I think Holgate laid out a plan for this type research.
Ed Sykes, our friend from the SMC was supposed to , along with Sonya Chowdury of AFME, be setting up the CMRC website, clearly that's running behind times.
Blogs were planned to be the way to communicate about MEGA from the start so what we are seeing isn't a new dialogue in response to patient concerns
I wish they would now be plain on the matter of criterias, selection and fatigue vs ME. Is it going to be original plan, of broad fatigue with ME JUST small part, what are they going to do about the entrenched and severely ill and when are they going to submit application?
Ed Sykes, our friend from the SMC was supposed to , along with Sonya Chowdury of AFME, be setting up the CMRC website, clearly that's running behind times.
Blogs were planned to be the way to communicate about MEGA from the start so what we are seeing isn't a new dialogue in response to patient concerns
I wish they would now be plain on the matter of criterias, selection and fatigue vs ME. Is it going to be original plan, of broad fatigue with ME JUST small part, what are they going to do about the entrenched and severely ill and when are they going to submit application?
That horse has long bolted. We already live in a mass surveillance society, where insurers, marketeers, corporations are busy number-crunching our data for their own end. Facebook anyone ?
The problem is bigger and much wider than MEGA. How information is gathered and used in general is a massive issue, and we will not be making even one tiny dent in that whether MEGA goes ahead or not. We can, as much as we are able, expect any decent scientist to work within current ethical data guidelines and laws - and we do need to have clear statements on data protection, conflicts of interest etc - but this idea that the system will be overturned or the entire BPS network will collapse overnight if a bunch of us sign a petition saying we want rid of Crawley - that is ridiculously, hopelessly naive.
There is a big political and social battle that has started to an extent over this sort of mass personal data and privacy, but it will be a long haul. And it's not a particularly new idea, "genomics the new eugenics ?", is a theme that has been around for a while.
More specifically, there is an element of not having it both ways. Open data: "we have discovered that people with condition X have gene Y". That work can be done by a team of scientists who meet whatever purity tests you demand (..have you now or ever associated with anyone who has failed to understand the PACE ramifications ..) and still governments and bigcorp will be grabbing it with their grubby little paws to use against us.
charles shepherd
Senior Member
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In haste….
My understanding is that a PRELIMINARY PROPOSAL has to be submitted in January 2017
A great deal of discussion is obviously going on at the moment regarding all aspects of the protocol - including patent selection, the inclusion of people with severe ME/CFS, the use of ME Biobank samples. the composition/membership of the planning group etc etc
No final decisions have been made - which is why the MEA wants to play a constructive (and critical where necessary) role in what is happening right now
As already stated, The MEA supports the AIMS of this study - because we believe that -omic research does have a role to play in the wider ME/CFS research portfolio and having recruited a collection of leading experts in the different branches of -omics it would be crazy to ditch this study before the protocol has even been agreed
As previously noted, the MEA will only endorse the MEGA study if we are happy with the content of the protocol re patient selection etc that will form part of the preliminary application next year
JoanDublin
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- Dublin, Ireland
Nigel Speight has signed the petition and commented.
"Because I have long and bitter experience of the injustices done to ME sufferers by those doctors who hold to the psychological view of this very real illness
Nigel Speight, DURHAM, United Kingdom"
https://www.change.org/p/opposing-m...dence-in-mega-research-for-me-cfs/c/527889662
"Because I have long and bitter experience of the injustices done to ME sufferers by those doctors who hold to the psychological view of this very real illness
Nigel Speight, DURHAM, United Kingdom"
https://www.change.org/p/opposing-m...dence-in-mega-research-for-me-cfs/c/527889662
A.B.
Senior Member
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Regarding Prof Andrew Morris, University of Edinburgh. He isn't the same Morris as the one here http://impact.ref.ac.uk/casestudies2/refservice.svc/GetCaseStudyPDF/28021
Let's be careful not to accuse the innocent of having a BPS agenda.
Let's be careful not to accuse the innocent of having a BPS agenda.
Last edited:
Simple question:
If Crawley and White are not removed from MEGA at the time of the preliminary application would the MEA still support MEGA?
Thank you for informing of this @JoanDublin. Great news!
If people were in any doubt it is now clear that OMEGA should be supported.
Given that Esther Crawley of CMRC/MEGA reported Dr Nigel Speight to the GMC how can the MEA @charles shepherd support MEGA and Crawley?
Simon
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That wasn't what I meant - I'm a UK patient and probably have the same horror stories as everyone else when it comes to not being believed by doctors.
My point was that research has shown that mecfs patients are worse, on average, than those with other chronic conditions, both in population surveys and clinical samples.
eg Louis Nacul's study The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers | BMC Public Health | Full Text
Fig 1
clinical sample studies eg Komaroff Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups. - PubMed - NCBI
See Table 2
That real functional impairment was what I was saying was driving patients to see their doctors, regardless of whether or not doctors believed them (though I agree that would influence desire to return to see their doctor: though as Jonathan Edwards says, that's a problem that could affect research generally).
charles shepherd
Senior Member
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The decision as to whether the MEA will endorse the preliminary MEGA application (when it is completed) will be made by MEA trustees
This will be based on ALL of the information available at the time - patient selection, experts involved, critiques from researchers like Professor Edwards etc etc
These issues are all under discussion at present and have ben discussed in some detail on PR already
I have already stated that as Professor Peter White has resigned from the planning group he should not play any further role in the MEGA study
But I am not going to go into any further detail at present regarding personalities - apart from suggesting that people do need to be careful about making potentially libellous accusations about individuals that may not actually be true
AndyPR
Senior Member
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@Simon , I really am trying to understand your point but I can't seem to grasp it.
If I'm right, you think that, because the severity of impairment, PwME are likely to go to their GP more? Have I summarised that correctly?
If I have that right then I would agree that may be the case at the begining of the diagnosis but I would argue that as time passes, for the majority of PwME in the UK, the usefulness to those patients of going to their GP with almost any complaint becomes less and less, as they are, in their eyes, rejected time after time.
As an example, I recently tried to engage my GP in officially diagnosing what I believe to be my OI/POTS, not having seen her for the best part of 2 years. After describing my symptoms the discussion immediately went to exercise and deconditioning, after pressing by me she reluctantly sent me for a 24hr ECG. At my appointment with the cardiologist, his first words were he didn't understand why I was there, in summary his opinion was that as long as my heart rate was between 70 and 180bpm then everything was fine, and as I had CFS then I should try counselling as it was quite successful.
I currently have no inclination to go back to my GP, who probably views my false illness beliefs as successfully dealt with. I believe this will be the reality for the majority of PwME.
If I'm right, you think that, because the severity of impairment, PwME are likely to go to their GP more? Have I summarised that correctly?
If I have that right then I would agree that may be the case at the begining of the diagnosis but I would argue that as time passes, for the majority of PwME in the UK, the usefulness to those patients of going to their GP with almost any complaint becomes less and less, as they are, in their eyes, rejected time after time.
As an example, I recently tried to engage my GP in officially diagnosing what I believe to be my OI/POTS, not having seen her for the best part of 2 years. After describing my symptoms the discussion immediately went to exercise and deconditioning, after pressing by me she reluctantly sent me for a 24hr ECG. At my appointment with the cardiologist, his first words were he didn't understand why I was there, in summary his opinion was that as long as my heart rate was between 70 and 180bpm then everything was fine, and as I had CFS then I should try counselling as it was quite successful.
I currently have no inclination to go back to my GP, who probably views my false illness beliefs as successfully dealt with. I believe this will be the reality for the majority of PwME.