Quite overwhelmed by the support of our petition and grateful for the comments outlining their reasons that signatories have taken the time to make.
Here are just some examples…
The involvement of anyone with connections with the BioPscyhoSocial view of the illness invalidates all caveats and pleadings for a broad based project approach. Medical education and training as well as Government/NHS/MRC/DWP/NICE must all first endorse the destruction of the PACE study by valid science and change accordingly. Any understanding of ME must have some association with outcomes that will provide effective treatment options. Much clarity is needed to avoid “going round in circles” or “re-inventing the wheel” the CCC and ICC provide a sound basis for diagnosis and treatment.The earlier work on enteroviruses must be kept in mind.
I have no confidence in some of the people involved in this, and fear it will waste further money and the results manipulated to back existing theories.
I enquired and have been told by persons representing MEGA that the subject selection criteria for MEGA will be the same as the totally discredited PACE study. A significant amount of MEGA staff were involved in PACE and this should immediately disqualify this study. We need substantial funding for ethical studies on M.E./CFS not more studies to line the pockets of scientists who are approaching the study with immoveable preconceptions. Thank you.
M.E. needs empirical research – not the unethical, pseudo-scientific clap-trap peddled by the proponents of the ‘bio-psycho-social’ nonsense.
No Trojan horses for P White et al. – exclude them, or they will subvert all attempts at credible research.
This is a difficult call, when it’s a project that sounds like it could be so potentially great. But the last great big UK CFS study, the biggest in the world to date, headed up by some of the same key personnel, was an omni-shambles that has actually held the field back and done much harm via misdirected advice to the medical community.
I wrote to the chair of the CMRC as was being recommended when this potential project was first announced. My reply totally ignored most of the points i had made. I feel they believe by replying they are ‘engaging with me’ therefore ignoring most of my letter doesn’t matter, this is distant from reality and I’m joining this petition because i feel its the only way to let my objections be heard.
I have ME and prefer the money going into research that can benefit me and other ME-patients – instead of this pre-biased one.
My Mother has suffered from ME/CFS for year and years. I vote NO CONFIDENCE in the MEGA research for ME. …. My Mum and Dad’s lives have been cut short by this horrific, debilitating disease…. They should be enjoying their retirement and spending time with their grandchildren, not living a day to day existence governed by ME/CFS. The Wessely school of thought must be abolished to enable reputable Bio-Medical researchers to really make a difference to my family and the millions of other people and families suffering.
I understand it’s intended that the patient cohort be drawn from the NHS ME/CFS clinics. These clinics only cater for people who are moderately or mildly affected by the illness, and completely ignore those who are most severely affected (at least 25%). In what other illness would such a situation be sanctioned? This fact alone makes the MEGA project flawed from the start, not to mention the other factors mentioned in the petition. It is imperative that any such project, which is worthy in its essence, be untainted by the appallingly costly mistakes of the past, and by the personnel involved in those mistakes.
We cannot trust discredited researches to do us credit. We will never get well while they persist with the fallacy they are promoting. They area disgrace to the medical profession.
Any research not involving the severely ill patients is a criminally wasted opportunity. You won’t find them in NHS clinics. Being asked to support research being conducted or ‘advised’ by researchers who follow the Wessely school of thought about this illness, following the PACE trial debacle, is highly insulting to me as a severely ill ME patient, and I suspect many others. It’s utter madness to think the ME patient community would show support for a vaguely set out research project commanding so much in the way of UK research funding involving White and Crawley or anyone else on the ‘team’ who gives credence to the BPS model of this illness. No more wasting time and lives – I vote ‘no confidence’ in MEGA.
ME research must be properly constituted and funded. There is no time for further mistakes while sufferers have no treatment to help them.
I fully support the wording of this petition and equally support many of the comments made. I’ve lost decades of my life to this illness and it’s long past time that true biomedical scientific research was properly funded, where nobody from a bio-psycho-sociological background is there to potentially undermine any resultant data in the eyes of either patients or the wider scientific community. This is especially important given how those involved in the PACE trial acted and it totally undermines MEGA that anyone involved with PACE or MAGENTA has been given any position within the proposal, let alone a leading one. The BPS model has held back good research and hugely negatively affected the attitudes of the UK medical community towards patients in general for long enough. It’s time to give pure biomedical science its turn, a turn that is disturbingly long overdue. Any serious biomedical study must also include people from the severe end of the ME spectrum to be of any genuine worth.
I’m signing because i have no confidence in the mega project or the people running it.
I have been treated terribly by doctors telling me I am making my illness up, that I should get on with it and stop looking for attention, and that I should just get a girlfriend because I am just stressed. I, like many others, have suffered further at the hands of medical practitioners and a medical industry grounded in the findings of the 2011 PACE trial, even after it has been discredited. And while it speaks volumes for the NHS’s attitude towards genuine mental illnesses, after so long and so much research pointing to ME not being in the mind, it is unacceptable to ignore it is a systematic, biological disorder. Further, it is unacceptable that those involved in the PACE trial, who so willingly and happily hid their conflicts of interest and caused so much suffering to chronic patients should be allowed anywhere near another study in chronic illness.
The individuals involved and the charities involved. Ethical concerns.
I’m signing because it has been shown that these people were involved in the research and recommendations for GET & Pace “treatments” that have now been shown to be a sham! I do not want these people involved in any more research into M.E. they have not proved themselves worthy of this kind of responsibility into M.E. research or this amount of money when there are far more deserving researchers who desperately need more funding into their worthy research.
It’s unconscionable to think that the same people involved in the PACE Trial fraud should be involved with any more research into ME.
1.) I cannot support researchers with a track record of violating the Declaration of Helsinki (in the PACE and SMILE trials)
2.) No details have been given as to how moderately-to-severe and long-term sufferers will be recruited.
3.) Given the broad inclusion criteria, I am unconvinced as to whether participants recruited will adequately represent the population of ME/CFS sufferers.
4.) MEGA’s ambitious target of 12 000 participants does not appear to be credible in the landscape of other active ME/CFS big data studies (e.g. OMF), either from a financial or a practical perspective, without seriously compromising the aims of the study.
I would reconsider supporting MEGA, if these issues 1 and 3 could be resolved. More details on issues 2 and 4 would also be required.
Research has to be independent unbiased and worthy of rigorous scientific scrutiny of it’s evidence by it’s peers in order to be credible and purposeful.
Both the proposal and the history of the PACE trial do not engender any confidence in this group of researchers. No-one who has perpetrated any form of scientific fraud should ever receive further funding.
I’m signing because I have two children with ME who are currently being neglected by the NHS, who’s only approach is to offer CBT and a ‘behavioural’ plan. Not good enough when the WHO recognises this is a multi-systemic physiological illness. Research and proper treatment is needed asap.
People with ME score lower on the Health-Related Quality of Life score than many other conditions, including multiple sclerosis and stroke. There is a dire, urgent need for research into ME that can shed light on the pathophysiology of ME so that there is a better understanding of the disease, and to provide better tools for diagnosis. Research studies need to be scientific, have clear aims, use robust methodology and objective endpoints.
The proposal to conduct a ‘big data’ genomics study may indeed be the latest trend but, in my opinion, it is not what is needed right now for ME.
First, we need a better understanding of the pathophysiology of ME. Without it, there is a possibility that a big, expensive genomics study will produce tens or more of risk loci with no understanding of how they are linked to the disease. Given the dire situation that ME research is in, I do not think a genomics study is an appropriate use of funding and is not the most promising line of research.
Instead, we need research that builds on the studies that have already yielded interesting findings in ME patients in areas such as skeletal muscle dysfunction, the metabolic profile, immune system abnormalities, infection, neuroinflammation and cardiac dysfunction. These are mostly small studies using 50 or fewer subjects and need to be repeated in a larger sample population. This would be a better use of funding, in my opinion.
A further point is that three of the proposers took part in a campaign organised by the Science Media Centre to smear ME patients. If researchers want support of patients for their research they could start by showing the patients some respect.
No one involved in the PACE trial should be involved in any further ME research.
I am of course pleased that new researchers have been encouraged to enter the ME field of research, but am very concerned that the “experts” they encounter whilst working on this study might be those who take a biopsychosocial view of ME in the way that the PACE trial did.
It is totally appalling to use PACE exponents as advisors on any biomedical base study. Their involvement makes this study unacceptable for any ME sufferer. It is tainted before it begins owing to these acting as advisers.
I welcome new researchers into the ME field they are badly needed and sufferers look forward to serious liaison with them.
Polling for opinions before any protocols have been devised or before patient workshops have been undertaken is an underestimation of patients knowledge. It shows a lack of respect endemic with the bps school.
As a result this whole situation needs a complete rethink, starting with really listening to patients who have a vast knowledge of their illness. Why fatigue is not even the best symptom to study …for example…. A MEGA rethink commencing with what we already actually know biomedical wise is called for….ME/cfs isn’t just fatigue….
The inclusion of powerful BPS adherents will ‘poison the well’. I have no confidence that any results will not be spun to their advantage and to the detriment of patients.
After careful thought I am signing this petition because:
I well remember the years of waiting in the run up to the PACE trial and the years during and after. The PACE trial brought everything to a complete stop, funding for other research stopped and NICE guidelines etc. couldn’t be changed as we waited for the definitive answer. Then we were faced with a sham result that has taken years of opposing to expose. Mega would be even worse. So much money tied up in one basket is a very dangerous thing to do especially with the BPS school in control.
How could we trust a BPS Group that has shown no contrition for what they have done to the wider ME community but plough on regardless.
I have not seen any parity in biological funding in recent years that would reassure me only one award to Julia Newton that had to be shared while the PACE or Wessely group seem to be awash with money. Esther Crawley is churning out poor quality papers in order I imagine to gain supremacy as the top child ME/CFS expert, using numbers over quality as a means to that end.
Why are 2,000 children being included at all, and why are they being provided by Esther Crawley, when she has recently been inflating the figures of those affected to almost one in every class. And has been responsible for the SMILE trial (highly unethical Lightning Process trial) and is currently engaged in MAGENTA a PACE type trial for children.
Finally the launching of a bizarre petition to persuade patients to sign up in support of MEGA pre-empting support before any proper details or proposal had been worked out. Even in that they couldn’t help themselves from fiddling with the term Post Exertional Malaise a key symptom crucial to the diagnosis of ME, by changing it to Post Exertional Stress!
I do not have any confidence in some of the researchers as they were involved in the disastrous Pace Trial which has done the ME patients immeasurable harm. Dr Crawley is still involved with Magenta and I am deeply concerned for the children in that trial.
Because I live with ME in Australia . I have learned not to trust the kind of research conducted by those involved in this. It seems a ploy to ensure money for those discredited by the PACE debacle, without clear plans to actually help very sick people. There are many better research projects without around.
So tired of being sick and having to defend myself from doctors. The whole PACE fiasco moved treatment backwards. We won’t tolerate this anymore.
While welcoming new biomedical research and some highly-accomplished new researchers to the neglected field of ME, this proposal requires a drastic remodelling. In its present form it appears to be ill-conceived, a waste of scarce resources and the inclusion of those who supported the PACE trial to the serious detriment of patients displays a lack of respect for the ME community.
It would be far more beneficial to patients if a series of smaller studies concentrating on the severely ill were the main focus of research. The present scope is far too wide and using the fatigue clinics to source patients effectively excludes those seriously affected by well-defined ME who should be the priority. They also should provide the greatest number of abnormalities.
This study in its present format would exhaust the funds for research into this disease for years to come and again leave this generation of patients without hope for the future.
It is also totally unacceptable that any proponents of the discredited PACE trial, and the BPS proponents, whether researcher or self-appointed patient representatives, should be involved in this trial. Such researchers have caused a disgraceful level of suffering for the patient community and have even stooped to libelling the patients when rightly challenged through the official channels. Such behaviour is not acceptable and including them in the trial is disrespectful to patients and undermines the credibility of those who are organising the research.
I look forward to supporting the trial when necessary changes have been made.
I’ve had ME for 12 years, I want the money spent more wisely on research , not given to anyone connected with the seriously flawed PACE trial.
Because I have had M.E. for 48 years and the last 30 year’s research has been ruined by too much psychiatric research/PACE etc (which drove a fellow sufferer friend of mine to suicide).
Mega data research relies on there being good quality research data to draw. With so little funding into biological research into ME the results are likely to be skewed. This happened with the mega data study done for the UK Occupational Health Guidelines for CFS / ME, which used only research into CFS with its subsequent – and still existing – psychological bias.
So if you want a mega data study into CFS there is one already done! With ME no where to be seen. Correct this study and maybe we might have a little more confidence in the robustness of the science being used.
There is no garantee that this research will be done in a serious and relevant way. There is no clear protocol.
I am angry that funding keeps going to corrupt unethical research for this illness.
I have signed as the foundations of this trial are not sound.
The patients picked for the trial will not have been accurately assessed as having M.E as the criteria is flimsy. Only those who match Canadian Consensus criteria can be sure to truly have this disease.
Severely affected ME sufferers will not be represented as they are too ill to attend the clinic’s and Drs that will choose the patients involved. They are in need of mist help and many answers to the origins, progression of this illness will come from them,and they are being overlooked as they always are from dubious trials.
Ester Crawley and Peter White whose work on the PACE trial has been proven to be erroneous, ineffective and potentially damaging will have advisory input. There “expertise” cannot be trusted and I believe would undermine and damage any authentic data.
The Patient advisory group will be taken from AFME who also had input into the erroneous PACE trial, so equally are untrustworthy.
The transparency and accessibility of trial Data + outcomes etc for Patients involved and Independent Researchers, Statisticians etc ; is unclear ….. It’s imperative this is established before any trial take s place.
The Data in the PACE trial was tampered with and reinterpreted by the medical “experts ” involved.
There are so many reasons I have no confidence in this trial, but due to the last trial where some of these were involved in it; me + many millions if others have suffered terribly.
We don’t want to suffer further by this very dubious trial.
There are authentic trials and research been undertaken elsewhere by people who have integrity, eg: M.E bio bank etc.
Along with millions of other ME suffers; I want funding to go to them so they can genuinely find answers, treatments to help us. Thank you. Please don’t let MEGA be funded it will cause us further untold misery, pain and suffering.
Never before have I seen such deceit in a purportedly ‘professional’ petition and study. MEGA is far from a biomedical study. It is heavily weighted with psychosocial biased researchers and charities. Psychiatric control over this illness has to stop now. No more abuse of sufferers, no more psychiatric deceit, no more psychiatric spinning of results. Stop MEGA.
I’m signing this because some of the researchers involved in asking for funding were involved in the PACE trial and their methods were less than reputable with a useless outcome which has caused people suffering with ME/CFS to suffer further. The findings of PACE have become practice throughout the country. MEGA plans to include psychiatrists in their trial and include those with depression in the patient cohort, despite stating they are searching for a biological basis for this condition. The combination of these factors make the research fatally flawed to my mind. I’m also signing this because I initially supported the MEGA petition for funding before making further inquiries, and now rescind that support.
MEGA is simply too tainted by early leadership from the fraudulent “biopsychosocial” cult. British science cannot stand another such tragedy as the PACE trial with its falsified outcomes. Britain’s patients deserve cures, not another quarter century of fraud and abuse.
I suffer from ME since 1984. I’m completely housebound – I got between many other things, a sever writing aphasia – so can’t express myself on paper – But totally agree with the text of this Petition
The methodological abuses of the PACE trial have brought international condemnation. It would not be appropriate to support any new trial involving the guilty parties.
I am signing this petition because I am a childhood sufferer of ME. I developed severe ME when I was eleven I am now thirty nine. I have endured over a quarter of a century with this dreadful disease that takes everything from you and leaves you with nothing worth living for. I have no past and no future and I have to fight every day to get something meaningful from life.
Along with all brutal realities of this disease I also had to endure Apartheid of medicine brought about by the BPS school. I had to learn the harsh realities of life with ME that care and compassion was not for the likes of me but for others who qualified through having conventional and approved conditions. That I would be shunned by doctors, shut out of the system, disbelieved, neglected, given wrong diagnosis’s, and left to suffer years in pain.
Of course I would like biomedical research into ME, for me it is the only hope of having a real life. But nothing would make me sign in support of the MEGA study. Why are the Wessely School and any colleagues of theirs involved in this study? They cannot be trusted, they show no compassion, they are ruthless in their pursuit of dominance in ME and they hold back research. I can only imagine they are involved because it is going to delay research in the UK for decades, eat up all the biomedical funding and further their careers at the expense of patients.
Enough damage has been done, enough money has been wasted. This seems an adhoc approach to research, not scinetific
Too many sick people have been harmed by the ‘Wessley school of thought’.
Yes we need much more Biomedical research into ME but there is no place for psychologists/psychiatrists in this study. The reanalysis of the highly flawed PACE trial is evidence of that. I will not support a study which has any involvement with Crawley and White.
Enough money and time has already gone on dubious studies and this with its broad criteria and psychs having too much say on patient selection is a bad thing.
I was unsure about MEGA, but I have concluded there are too many negative factors to support MEGA and why I have signed this petition.
Points I considered included:
– Having someone like Esther Crawley who clearly supports the flawed biopsychosocial theory of ME directing this study. The scientists involved know nothing of ME politics and will be deferring to EC as she is described as a ME expert which she patently isn’t. Her area is unexplained fatigue.
– I think recruiting patients from NHS clinics will miss swathes of people with M.E, the severe and the long term sufferers.
– Professor Jonathan Edwards has publicly stated the study has too many weaknesses.
We all want bio medical research, but it must be not tainted by researchers who have been involved in pushing a theory of M.E that has brazenly ignored all biomedical evidence and the testimony of ME patients putting back large scale research and treatments being developed by decades. I cannot trust the direction of this research with such people involved.
I am fed up of the Wessley school hijacking research funds that could be used more wisely into biomedical research into M E. The researchers behind PACE should be struck off for their incompetence- not given more money to squander.
I’m signing to try to protect present and future M.E. patients from further damage from the bio-psycho-social perpetrators of PACE and MAGENTA. This has to end once and for all for those of us with this devastating illness.
I have had ME for 27 years and have been badly damaged by the fact that doctors do not believe I have a real physical illness and have encouraged me to exercise. I have watched with horror the travesty of science perpetrated by supporters of the biopsychosocial model of ME. I am glad their ‘research’ has now been revealed to be fraudulent and/or of such poor quality as to be meaningless and indeed harmful. The two individuals being used by MEGA as their ‘experts’ on ME are two of the worst perpetrators of this travesty of good research and should not be allowed anywhere near any future research projects. If the good biomedical researchers listed by MEGA are to be involved in researching ME, I would like to see them using the already set up ME biobank as their source of material/subjects for research, expanding that resource as money allows so that large high quality biomedical research can be carried out in a way that ME patients can support and desperately need.
Decades of anti-science from psychiatrists is unacceptable. M.E needs proper, focused research, studying those who suffer most severely with the disease. Since when did Alzheimers research study 12,000 who had just become slightly forgetful?
I think the money would be better spent on good biomedical research without any involvement of those who back the biopsychosocial model of ME and who work with such broad definitions as to be meaningless. The same -omics researchers listed in the MEGA proposal could instead start work as soon as funding is available using the already set up ME biobank. There is no point in establishing another and wasting years and vast amounts of money on a project so large in scope it must inevitably lack depth and take years to complete.
I have been subjected to abuse by followers of the psychological model of me and do not trust this group with the job they are opportunists and should make way for people who have shown their integrity by adhering to the biochemical model consistently for years.
Why anyone would think it’s acceptable to have people who were involved in PACE in any other research, but particularly ME research is beyond me. They have proved themselves dishonest & have caused harm to many. There are brilliant biomedical researchers who could use those millions to great end rather than it going on more of what we’ve had for so, so long. It’s time this stopped. Too many of us have lost too much for too long, enough is enough.
I have watched those researcher abuse very physically ill people for decades and now they are discredited they now want public money to find a new tact by which to pursue their agenda. I say NO MORE.
Researching “ME/CFS” has always meant researching so-called “CFS”, which means fatigue for more than 6 months , which is not ME. (ME means pain+brain/spinal cord inflammation). “CFS” therapy does not work on ME. It is time to stop wasting money on “CFS” (which “has always been a nonsense” anyway, to quote Childrens Charity Tymes Trust’s chief exec Jane Colby). It is time to redirect the millions of evidently available research funding to genuine, rigorously defined, neurological M.E research.
No confidence at all.
Having already suffered harms due to these Wesselyan conmen.
No more lining their pockets at my (and others) expense
I’m signing because I wish to put a stop to the serious waste of finance that has been squandered so far by ill informed “Specialists”. These individuals have not only damaged truth and honesty by either deliberately ignoring or by total incompetence!!
Enough is enough and I hope that there will begin total professional and ethical research!!
The serious waste of time is scandalous apart from the waste of funds that might have been used for the crucial reaearch benefit we are entitled to!!
Research is stronger when it’s better and we can do better than this.
MEGA seems a very costly exercise that might not get useful results for the patients currently confined to bed and desperately awaiting reasonable medical attention.
A more focused study (or series of smaller studies), looking at the most severely affected in greater detail might be more immediately useful than a survey of a very wide cohort of fatigued patients.
I am also seriously concerned about the inclusion of researchers who buy into the biopsychosocial premise for ME aetiology.
Surely the funding directed to this study could be more usefully spent on trialling promising drugs, and investigating the pathophysiology of the most severely affected.
I am of course pleased that new researchers have been encouraged to enter the ME field of research, but am very concerned that the “experts” they encounter whilst working on this study might be those who take a biopsychosocial view of ME in the way that the PACE trial did.
I have too many concerns about this trial to be supportive of it. I urge a major re-think.
No more time or money should be wasted on research that is not fit for purpose, and causes damage to patients and perpetuates harmful misperceptions. ME patients have tragically suffered and been abused by the system for a disgracefully long period. We will not stand for it any longer.
Research should be independent, without prejudice and have a clear positive goal. It seems to me that MEGA is none of these things.
We want genuine, focused, biological research…. we don’t want more corruption, lies, wasted money…. and wasted lives!
I strongly welcome biomedical research but I cannot in all good conscience support anything that PACE proponents are part of. M.E.G.A in its current form risks wasting millions and further damaging the fragile trust of patients. I ask all M.E.G.A researchers to engage more widely with the patient community and to listen to what we want. I urge them to look much more closely at studying the most severely affected sufferers; many of whom can’t engage with NHS clinics. No more wasted time or money when people are suffering so terribly.
Oh no anything involving the PACE fraudsters is bad news and will not only be a waste of money and time doing this research but will no doubt come up with more patient harming treatment conclusions.
We know very little at the moment about aims and methods but given it could tie up a lot of research money for many years to come it is important precious resources and time aren’t squandered as in the PACE model. To this end from the outset it is simply absurd that people involved in a model which appalled the community it purported to serve should be involved. I don’t think given the harms done people should get to carry on as if nothing has happened. Even with politics aside there is no requirement for psychiatric involvement, given the awful job they do with cohorts making all sorts of inappropriate inclusions which would skew results. Look at the time and money wasted with PACE. The BPS model and those involved should be left in the past. What’s needed now is genuine scientific rigor and ingenuity and a biologically open mind. It is also crucial severely affected are studied too as they are the biological linchpins who could shine light on whole puzzle.
BPS model inflicted on 2,000 children would break my heart if I had not tried with every last ounce of energy to stop it.
It is impossible to have confidence in the MEGA project proposal as it currently stands for a number of reasons. Petitioning the patient population to support the MEGA project without complete transparency in the hope that patients will blinded get behind this project without a range of assurances in place it is beyond belief. The participation of researchers who subscribe to a BPS model of the illness is beyond the pale for ME patients given that they have singularly failed for decades to put the needs and well being of the patient population first. Their involvement in the scandal that is PACE and the continuing denegration of patients adds insult to serious injury and will discourage patient participation. The lack of information about how the cohort will be selected, the recruitment through CFS clinics (limiting the choice of patients to those being currently treated, who have been diagnosed via NICE and the exclusion of the most severely ill) does not inspire confidence that the cohort and therefore the resulting reasearch will be meaningful with respect to ME.
I would rather good research happen elsewhere in the world than support an Ill thought out project here. I’m also concerned that people from the discredited PACE trial would be involved. I feel they would undermine my illness again.
We need real research into real treatment. We need drug trials! Enough of the sham research like the PACE trial.
No research is better bad no research as we have learned to our cost with the PACE fiasco.
Stop psychosocializating ME! We have now enough proof that it does not help. Our son was severe ill in 5 years. He has been treated with Rituximab and is well now.
I believe it is unethical for further research in ME to be carried out by anyone involved in the discredited PACE trial. Psychology and Psychiatry would have no input or interest in a biomedical study of other serious and complex diseases, it has no relevance here. Given the harm caused to patients by PACE and the biopsychosocial model, the same people once again going for funding for another big trial on the same community who are desperate for answers i and treatment is quite shocking and shows what little regard they have for listening to the needs and views of patients. IT strikes me that a big study such as this may benefit keeping funding coming in to universities and thus those involved in jobs for years to come, but may not lead to answers and treatments so badly needed. There is some great bio research in ME going on in the UK and other countries I would urge those with a true interest in ME to collaborate with these projects that have the support and trust of the ME community.
People with ME have been medically neglected for over 30 years, the psychosocial model has failed, PACE discredited. Biomedical research has been ignored. Too many have lost years and lives to this dreadful disease. NO MORE!
As a person disabled by ME for 20 years, I’m fed up with unsound research using subjects both with and without ME mixed together in a single group and ambiguously labelled “ME/CFS.” The results of such research will always be inconclusive, unreproducible, and inapplicable to any specific patient group. It’s a cruel waste of time and money – especially when discredited members of the unscientific psychosocial school are included in the project. Stop the MEGA study now! I would rather see no research at all than have hopes raised by this travesty of proper research that can only waste time and resources.
I do not want Prof White or Esther Crawley near any ME research. They do not show any respect towards patients and have so far wasted a huge amount of money on research which has provided no benefit. It’s time for other researchers who have no conflicts of interest to be given the opportunity.
‘I also wish to withdraw my support knowing Peter White is involved, even in an advisory role. The PACE trial was shockingly bad science that has caused severe harm to many very sick people and Dr’s that speak out are punished ( Nigel Speight ). I think for anyone to have any confidence in UK medical research community the shocking reality of the PACE trial debacle needs to 1) owned up to 2) widely reported, including in the Lancet. The systemic failure the peer review system needs to explained, and measures put in place to avoid a repeat. Potential conflicts of interest need to be stated right at the beginning of the trial and all participants need to be made aware of this. Those responsible for all the harm caused need to held publicly accountable ( fraud/manslaughter? )People have died as a direct result of being sectioned and forced to undergo treatments based on the deeply flawed and unscientific PACE trial , and the Biopsychosocial philosophy behind it, and no one has been held to account.
I am a MECFS sufferer and want a resolution to this awful disease. Not re-examination of old data sets.
We need to stop people like this from preying on the hopes and dreams of ME patients and their caretakers. We need to stop them from stealing our money and causing more physical and emotional harm. We need to stop the sigma and harmful treamments of ME.
Having been a lay member of NWRES & having had cfs / me diagnosis in the past, I feel there is better research being done else where, by better research groups with a much more appropriate and rational-evidence based approach.
The psychiatric field has had devastating effects on patients with ME. Their input has delayed LIFE SAVING biomedical research for years that has resulted in suicides, death. The has also caused horrific public perception. This impact has been worldwide, not just in the UK.
We desperately need good biomedical research.
This must include those most severely affected and a good cross section of the patient community (not just those currently using an NHS Clinic, these clinics are inaccessible to most and often not beneficial or short term so would not be representative of current ME/CFS patients in UK).
There must be no focus on BPS, more than enough money wasted and harm done following this. Having any involvement by those that believe this as the root cause only harms the integrity of the studies.
The definition for ME/CFS must be clear and meet defined criteria Institute of Medicine, Canadian, and Fukuda this covers all bases and enables data to be comparable between other studies using all of these criteria.
Many of the patients I know online were successful professionals who were NOT riddled with psychosocial issues prior to disability. There is actually game changing research taking place that is investigating the genetic and environmental causes of ME/CFS. With the state of the NHS, we do not need to be wasting our money on BPS research. This line of research has delayed funding to physiological causes and turned a patient group into pariahs in their own families. This abuse of the patient population must stop.
PACE was a sham of a trial and, if MEGA is run by the same people, this will be as well. Damaging to patients and carers, plus another colossal waste of money.
When both my sons were severely affected by ME and housebound, they could not get to a London hospital that was claiming that they could benefit all ME patients with their ‘treatment’. The doctor I talked to said that they were going to focus on the ME patients that were less severely affected because those were the ones they could help. It was very logical, but as a mother of two seriously ill children, I felt excluded from access to any help or hope, and abandoned by the medical profession. Now I realise the political expedient. If they only help those who are the 20% who are going to get better anyway, they can ignore the 60% who relapse and remit for life, or the 20% who remain bed bound and housebound for life. We are The Invisible. If we don’t exist, then funding for research is denied, benefits are not paid, support for care and housing will not be provided when parents die and can no longer provide for their severely disabled children. To write us out of existence is so much more convenient for those whose paradigm requires us to disappear.
I want REAL biomedical research, not some trumped up politically motivated research that will tie up MRC funding into ME/CFS for years to come. The people who formulated MEGA are not trusted for very good reason. There is plenty of other patient supported ME/CFS research in need of funding without this. We will not tolerate being stitched up yet again.
I am signing this petition, because I have no faith that this so called group will help me or people with ME/CFS (Myalgic Encephalomyelitis) after the falsification of the Pace trials.
I’m signing because of the involvement of Peter White and Esther Crawley.
I cannot support any study where dishonest and abusive researchers with a history of trying to shoehorn ME/CFS into the mental disorder category are consulted as experts.
There are too many things that make me uneasy, in particular the proposal to source participants through CFS clinics will exclude too many pwme. Any proposed research needs to be fully inclusive and concentrate on the cause the physical symptoms and how these can be better managed other than by CBT or GET which have been proved to be grossly ineffective.
As a severe-ME sufferer, I do not believe MEGA is the best way in which to research ME. CFS symptoms are common in many illnesses inter alia Lupus, Fibromyalgia, Depression, Cancer… The MEGA research as suggested seems unlikely to be able to narrow in on ME and is unlikely to obtain sufficient funding to fully research the biomedical as opposed to somatoform issues. Additionally the involvement of individuals & organisations who have not yet been held accountable for the failings in PACE etc., let alone had the decency to apologise for their failings, is totally reprehensible and a slap-in-the-face to the ME-community.
I desperately want good researchers to carry out some research on ME, of course I do, and I thank those that want to help us, and say to them please continue to try, but I cannot support anything that involves people involved in the PACE trial, who control the media and slander the patient community in national press again and again, and I am also disappointed that the research collaborative use Action for ME as their link to the patient community. I do not trust that they have our best interests at heart, with their history of supporting and not speaking against these psychiatrists and the BPS model.
To those genuine and good researchers, please stand up for us, and for good quality research that you can be proud of. Speak out publicly about the injustices and the malpractice. Become our ally truly. The UK will be looked down on as lagging behind with these compromised studies. Shake off the old order and start afresh, and maybe we can really make some progress. We cannot waste any more time or lives. And please stop patronising us with gimmicky petitions, we have brains and we have had enough of being toyed with. It breaks my heart to say no to research that could have some very positive results, but for me the team needs to be redesigned and this needs to be done properly. Study the very severe, follow the leads of previous research, link in with other work internationally, sort out the diagnostic criteria to allow this. Give us some hope that you are in this for the right reasons and that future generations won’t suffer like we have. Thank you.
To sign our petition or read all the comments, click here –
Opposing MEGA – A Vote of No Confidence in MEGA Research for M.E.
Twibbon – Opposing MEGA