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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Bios are up on the MEGA petition

https://www.change.org/p/support-th...ation-to-major-uk-research-funders/u/18193568

includes
Action for M.E.: Represented by Sonya Chowdhury
Sonya is Chief Executive of Action for M.E. and represents the four patient charities involved in the UK CFS/ME Research Collaborative Executive Board on the MEGA team. Sonya has worked with Action for M.E. for just over four years and has direct experience of M.E.
Action for M.E. has funded research for ten years including securing £500,000 funding from the Big Lottery Fund to establish the M.E. Observatory. The charity has a 45-people strong Patient and Carer Reference Group and has a VOICE Committee of lay members who input to the assessment process for research funding applications. Sonya’s contribution will be to support (adult) patient engagement in MEGA.

Association for Young people with ME: Represented by Mary- Jane Willows
The Association of Young People with ME celebrates in 20 Anniversary this year and to date has supported over 10,000 children and families in crisis. This work includes, helping children access a diagnosis and management of their condition, support in their right to an education that meets their needs, and advocating on their behalf when they are too unwell to speak for themselves. AYME’s vital work includes raising awareness of the condition of children with CFS/ME with the government and in the wider population.
The Association for Young people with ME believes that high quality research into CFS/ME is necessary to change the understanding and treatment of this difficult condition. Children and young people with CFS/ME want research, better treatments and a way forward. MEGA is the breakthrough that these children not only need but deserve. AYME will support the engagement of children and young people with ME in MEGA.

Professor Esther Crawley is a paediatric consultant and leads the largest paediatric CFS/ME service in the world. She was chair of the British Association for CFS/ME (2007-10) and has strong links with NHS specialist services throughout the UK. As deputy chair of the CMRC, she has developed collaborations with researchers from inside and outside the CFS/ME world.
Prof Crawley’s team conducts epidemiological studies and trials. They have described different phenotypes in children and adults, explored the causes of CFS/ME in children and continue to develop and investigate new treatments. Prof Crawley has a background in genetics and as CFS/ME appears to be more heritable in children compared to adults, she has wanted to explore the genetics and understand more about the different types of CFS/ME for many years.
 
Messages
55
This is some recent information on AYME in case anyone is unaware:
https://autodidactauthor.wordpress....ls-forbidden-fruit-ayme-make-final-statement/

They were the only charity in the UK, and indeed globally out of 30 ME charities, to ignore the express wishes of patients and go against patient interests by not calling for the PACE data to be released. Now that it has been released we have seen patients were absolutely right about it being in their interests to have that data become public. AYME refused to help uncover that scandal. They do not represent patients interests at all.

Many people have voiced other concerns about the things AYME does. Their involvement is wholly inappropriate.

It is worth noting that Esther Crawley is their advisor too. I have never seen one instance of AYME having a conflicting opinion to hers, so we have Esther Crawley and a so called patient representing charity that will side with her no matter what.

This MEGA study is looking more and more dodgy ever day.
 

A.B.

Senior Member
Messages
3,780
Paul Little seems to approach ME/CFs from a BPS perspective as well. He's investigator in a study that wants to figure out what factors make fatigue chronic, and whether an internet based intervention can prevent it.
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
So here are the biomedical crew, or those with no obvious BPS role (AFAIK). It's not a bad-looking team ;)

Summary:
  • Professor George Davey Smith is a clinical epidemiologist
  • Dr Warwick (Rick) Dunn is a Senior Lecturer in Metabolomics
  • Professor Stephen Holgate is MRC Clinical Professor of Immunopharmacology
  • Professor Maria Fitzgerald is a neuroscientist
  • Professor David Ford is Professor of Health Informatics
  • Professor James Horne is an (emeritus) Professor at Loughborough ...involved with various cross-disciplinary neuroscience initiatives.
  • Professor Julia Newton
  • Professor Paul Moss ... researches the application of translational immunological research in the study of human disease.
  • Professor Andrew Morris is Professor of Medicine... (Big Data projects)
  • Professor Caroline Relton is a professor of Epigenetic Epidemiology
  • Professor Colin Smith is Professor of Functional Genomics
  • Professor Chris Ponting is Chair of Medical Bioinformatics
Biographies:

Professor George Davey Smith is a clinical epidemiologist whose research has pioneered (1) understanding of the causes and alleviation of health inequalities; (2) lifecourse epidemiology (3) systematic reviewing of evidence of effectiveness of health care and health policy interventions (4) population health contributions of the new genetics. He has published over 1000 peer-reviewed journal articles, 15 books/edited collections and numerous editorials, commentaries and reviews.

He is an ISI highly cited scholar and Foreign Associate of the National Academy of Medicine and Fellow of the Royal Society of Edinburgh. He was co-editor of the International Journal of Epidemiology from 2000 to 2016, has sat on the MRC Public Health and Health Services Research and Physiological Medicine and Infection Boards, the MRC Military Health Research Advisory Group and the MRC Global Health Group and served on the Wellcome Trust Science Funding Interview Panel.

Prof Davey Smith has established or has been central to the running of a large number of epidemiological cohort studies involving detailed clinical and biomarker assessments. He is currently Scientific Director of the Avon Longitudinal Study of Parents and Children; and became Director of the MRC Centre for Causal Analyses in Translational Epidemiology in 2007 and of the MRC Integrative Epidemiology Unit in 2013. He is Director of the Wellcome Trust 4 year PhD programme in Lifecourse and Genetic Epidemiology at the School of Social and Community Medicine, University of Bristol.
----

Dr Warwick (Rick) Dunn
is a Senior Lecturer in Metabolomics, Director of Mass Spectrometry at Phenome Centre Birmingham and Co-Director of the Birmingham Metabolomics Training Centre.

Dr Dunn’s research group focuses on developing innovative chromatography, mass spectrometry, sample collection and computational resources and their application in the study of the complex role of metabolites in human ageing and diseases. Areas of methodological and tool development include: methods to profile large areas of metabolic networks applying untargeted bioanalytical and mass spectrometry approaches to both small studies (n<100 samples) and large studies (n>500 samples); quality assurance procedures for large-scale untargeted metabolomics studies for which Dr Dunn led many of the early developments from 2007 onwards and new methods and software tools for metabolite annotation and identification in untargeted metabolic studies.

Current and future developments have driven forward the group's capabilities to apply untargeted and targeted metabolomics studies for dissecting the influence of metabolites on human ageing and diseases in a systems level approach where phenotype and metabolism are integrated.
----

Professor Stephen Holgate is Medical Research Council Clinical Professor of Immunopharmacology and Honorary Consultant Physician within Medicine at the University of Southampton.

His current research focuses on stratified medicine [note: hence his interest in subgroups], the role of the epithelium in orchestrating asthma and the evolution of asthma across the life course. His work has resulted in over 980 peer reviewed publications (H index 133), 60 Book editorships, 453 Book Chapters and Reviews, 48 Editorials, 76 Official and Government Reports. He holds an MRC programme grant focused on the pathogenesis of asthma.

He is a Past President of the British Society of Allergy and Clinical Immunology and British Thoracic Society, was Chair of the MRC Population and Systems Medicine Board (PSMB). Stephen is Chair of Main Panel A (Medicine, Health and Life Sciences) of the UK Research Excellence Framework 2014, Chairs the UK National Centre for the Replacement, Refinement and Reduction of Animals in Research (NC3Rs), the British Lung Foundation Research Committee, the Hazardous Substances Advisory Committee (HSAC), and from 2014, will join the Science and Innovation Strategy Board of the Natural Environment Research Council (NERC). He is Chair of the European Respiratory Society Scientific Committee, Treasurer of the World Allergy Organization and Member of the Medical Science Committee of Science Europe. In 2003 he cofounded of Synairgen a publically quoted respiratory drug development company with a particular focus on lung antiviral defense in asthma, COPD and severe viral infections.

Professor Maria Fitzgerald
is a neuroscientist who leads a research group at UCL which is internationally recognised for pioneering work in the basic developmental neurobiology of pain.

Prof Fitzgerald is a world leader in science of pain in infants and children and an expert in the fields of both acute and chronic pain mechanisms. She has many research interests including investigating the neurobiological processes which underlie the development of pain pathways which includes the development of central processes underlying hyperalgesia and allodynia, the structural and functional effects of acute and persistent pain and the development of supraspinal and cortical pain processing. Prof Fitzgerald is a Fellow of the Academy of Medical Sciences (2000), a Fellow of the Royal Society of Anaesthetists Faculty of Pain Medicine (2013) and a Fellow of the Royal Society (2016). She will lead the development of new pain measurement within MEGA as part of the phenotyping process.

Professor David Ford is Professor of Health Informatics at Swansea University Medical School, where he is Principal investigator and Director of the Administrative Data Research Centre Wales (ADRCW), an £8million investment into Wales by the ESRC as part of its Big Data initiative. He is also Deputy Director of Farr-CIPHER – one of the four UK Centre of Excellence for E-Health Research, funded by a consortium of top UK research funders led by the MRC, as part of the Farr Institute.

David is joint lead of the SAIL Databank, an internationally recognised data linkage resource that safely and securely share linked and carefully de-identified data from a wide variety of routinely collected data from across Wales, and which supports a wide range of researchers from across the UK and internationally.

David is the principal investigator and director of the Multiple Sclerosis Register, a UK facility to collect patient-donated data and link it to clinical and administrative data, in order to support research and better service planning. 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 Swansea University and NHS Wales Informatics Service, the national programme for NHS IT for Wales. David is a Fellow of the Royal Society for the Encouragement of the Arts, Manufactures and Commerce (FRSA) and past Chairman and a current Director of MediWales, a membership organisation representing the medical technology sector of Wales. He is a member of numerous committees and national bodies relating to health informatics and health-related research. He has received research grants and consultancy contracts valuing over £45m over recent years.

Professor James Horne is an (emeritus) Professor at Loughborough and an honorary Professor at Leicester University, where he is involved with various cross-disciplinary neuroscience initiatives.
Until recently, Prof Horne ran the Loughborough Sleep Research Centre (LSRC), well known nationally and internationally for its innovative work on sleep. For fifteen years he was the Editor of the Journal of Sleep Research (Wiley) – the main publication of the European Sleep Research Society.

Professor Julia Newton
is Clinical Professor of Ageing and Medicine at Newcastle University and Director of Newcastle Academic Health Partners (a partnership between Newcastle upon Tyne, Hospitals and Northumberland Tyne and Wear Foundation Trusts and Newcastle University). She is Director of the Newcastle Fatigue Research Centre in the Faculty of Medical Sciences at Newcastle, and has developed the first fatigue CRESTA clinic (winner of the NHS INnovations NE service improvement award 2015).

Professor Newton’s has a background in investigating and managing fatigue in chronic diseases, including liver disease, renal disease and chronic fatigue syndrome. Her published research has been chiefly on the autonomic nervous system and its relation to disease especially primary biliary cirrhosis. Professor Newton's current interests, however, are focused on how fatigue develops, and she has a particular interest in "postural tachycardia syndrome" as a possible cause of chronic fatigue syndrome.

Professor Paul Moss
is director of Research and Knowledge Transfer at the University of Birmingham and Chairman of the Infection and Immunity Board at the Medical Research Council. He served previously as Chair of the Cancer Research UK Clinical and Translational Research Committee. Professor Moss’s research is focussed around the application of translational immunological research in the study of human disease. His current research group includes clinical and non-clinical research scientists working on a range of different projects.

Professor Andrew Morris
is Professor of Medicine, Director of the Usher Institute of Population Health Sciences and Informatics and Vice Principal of Data Science at the University of Edinburgh, having taken up position in August 2014.

Prior to this Andrew was Dean of Medicine at the University of Dundee. He is seconded as Chief Scientist at the Scottish Government Health Directorate which 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. His research interests span informatics and chronic diseases. He has published over 300 articles. He is Director of the Farr Institute in Scotland funded by the MRC and nine other funders and Convenor of the UK Health Informatics Research Network, representing a £39M investment in health informatics research. Andrew is a Governor of the Health Foundation, a leading UK charity that supports quality improvement in health care. Andrew also chairs the Informatics Board at UCL Partners, London and is co-founder of Aridhia Informatics, a small Scottish based biomedical informatics company.
----

Professor Caroline Relton is a professor of Epigenetic Epidemiology at the MRC Integrative Epidemiology Unit at the University of Bristol. She leads a large group of researchers who aim to improve our understanding of the determinants and consequences of epigenetic variation. Epigenetics refers to processes that regulate gene activity and are represented by chemical modifications to the genomic sequence. Prof Relton’s background in molecular epidemiology and research in the field of epigenetics offers the opportunity to identify novel biomarkers of disease and to establish whether these biomarkers are useful in prediction and prognosis.

Professor Colin Smith is Professor of Functional Genomics at the University of Brighton. His research exploits the new ‘genomics’ technologies to understand complex biological processes. He originally trained as a microbiologist and has worked extensively on the production of antibiotics that are active against superbugs. Professor Smith has recently moved from the University of Surrey to establish the new Genomics Centre in Brighton.

His genomics work now encompasses the study of human gene expression, particularly how our environment and diet influences the activity of our genes. He was involved in two major studies of how sleep deprivation and shift work/jet-lag exerts a major influence on the activities of our genes and begins to explain how sleep disruption impacts our health. He is also involved in a major study on the influence of vitamin D supplements on human gene activity. Although the results are not yet published the take home message is that we should all be taking vitamin D supplements – and ensuring that it is vitamin D3 (not D2)!

He hopes to bring his expertise in genomics to study, genome-wide, how human gene activity is affected by CFS/ME. This will be undertaken by analyzing gene activity in blood cells, which offer a window on what is happening in the body as a whole.

Professor Smith is a strong advocate of ‘personal genomics’ and its potential for enhancing human well-being. He supports the public sharing of such data and had his own genome completely sequenced in 2013 and deposited with Personal Genome Project UK.

Not included here, but part of MEGA:
Professor Chris Ponting | The University of Edinburgh
Professor Chris Ponting is Chair of Medical Bioinformatics and a Principal Investigator at the MRC Human Genetics Unit, Institute of Genetics and Molecular Medicine. Chris started his research in particle physics before moving via biophysics to bioinformatics and genomics. Aside from one year at the National Centre for Biotechnology Information (NIH, Bethesda, MD), he pursued his research at the University of Oxford before moving to Edinburgh in 2016. His research group has made substantial contributions to protein science, evolutionary biology, genetics and genomics. Early in his career he discovered many important protein domain families. He then provided the first evolutionary analyses for mammalian genomes whilst leading protein analysis teams for the human and mouse genome sequencing projects. More recently, his research established that 8.2% of the human genome is constrained, and thus is likely functional.
 
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Yogi

Senior Member
Messages
1,132
This is some recent information on AYME in case anyone is unaware:
https://autodidactauthor.wordpress....ls-forbidden-fruit-ayme-make-final-statement/

They were the only charity in the UK, and indeed globally out of 30 ME charities, to ignore the express wishes of patients and go against patient interests by not calling for the PACE data to be released. Now that it has been released we have seen patients were absolutely right about it being in their interests to have that data become public. AYME refused to help uncover that scandal. They do not represent patients interests at all.

Many people have voiced other concerns about the things AYME does. Their involvement is wholly inappropriate.

It is worth noting that Esther Crawley is their advisor too. I have never seen one instance of AYME having a conflicting opinion to hers, so we have Esther Crawley and a so called patient representing charity that will side with her no matter what.

This MEGA study is looking more and more dodgy ever day.

As expected the "Bios of the MEGA team" are very sanitised for the patient community/(cheerleaders).

A lot is missing from their biographies so I thought would add what they forgot to.

I would also add that both AFME and AYME supported the NICE CFS/ME CG53. Neither of them supported the judicial review in 2009 by two patients to remove CBT and GET and ensure proper tests are available on NHS.

https://www.nice.org.uk/guidance/cg53

http://www.meassociation.org.uk/2009/03/judicial-review-of-nice-guideline-for-mecfs-full-judgement/

Both AFME and AYME supported the PACE trial and continue to do so.!!!!!!!!!!!!!!!!!!

http://forums.phoenixrising.me/index.php?threads/afme-and-pace-trial.42801/#post-692577

http://www.ayme.org.uk/news/-/asset...ent/april-2011-analysis-of-pace-trial-results

I have included the full article from AYME below as it is not included on PR and in case they take it down.
April 2011: Analysis of PACE Trial results
The PACE trial results – an analysis by Vivienne Parry, OBE
The Association of Young People with ME (AYME) invited respected journalist and broadcaster Vivienne Parry to write an independent article on the PACE Trial in light of the controversy that surrounds it and the use of graded exercise therapy and cognitive behavioural therapy with this condition.


Vivienne Parry is best known for her broadcasting for Radio 4, where she presents many medical science programmes. In the New Year's Honours 2011, she was awarded the OBE for services for the public understanding of science. Below is Vivienne Parry's analysis of the PACE trial written exclusively for LINK members.

ME/CFS is a disease which has far too little time and money spent on it. And whilst research on its cause, or more likely its many causes, is still in its infancy, the need for better treatments for those who are affected today by this dreadful condition is acute.

Thanks to the PACE trial, the largest ever study of ME/CFS treatments whose results were published in March, we at least now know for sure that there are two treatments – graded exercise therapy (GET) and cognitive behavioural therapy (CBT) – that are safe and moderately effective.

But the trial outcome didn't go down well in the ME/CFS community with the result condemned as ‘disappointing and surprising' by some organisations, although it was welcomed by AYME. I want to take a look at those comments but let me first refresh your memories on what the trial involved and why it was carried out.

Back in 2003, patient groups were concerned that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) might do more harm than good. They favoured pacing (a way of adapting available energy to daily life with the help of a diary) along with specialist medical care but this had not been subject to a large scale trial. The only way to find out for sure which was the best treatment and whether there were any safety problems was to do a large randomized trial of the various treatments. A randomised trial means that neither eligible patients nor their doctors have a choice about their treatment; a computer randomly allocates them to one of those being trialled. This trial could not be blinded (no-one knows who's had what treatment) because the treatments are so obviously different but it was blinded as far as those who were analysing the results were concerned. This was as rigorous a study as it is possible to have.

From the outset, Action for M.E. and a number of patients were involved in the design of the trial. PACE involved 640 patients from England and Scotland. It was carried out by a team of experts and led by researchers from Queen Mary University London, King's College London and the University of Edinburgh. The research proposals were subject to extensive review and scrutiny by independent experts and trial committees. The £5 million cost was funded by the Medical Research Council, the Department of Health, the Scottish government and also by the Department of Work & Pensions.

The trial assessed the safety and effectiveness of four separate treatments: specialist medical care alone, specialist medical care combined with cognitive behavioural therapy (CBT), or with graded exercise therapy (GET), or with adaptive pacing therapy (APT), usually just called pacing. The specialist medical care involves general advice about managing the illness plus normally prescribed medicines for symptoms such as insomnia and pain.

The 640 patients, all of whom had fatigue as their main symptom, were assigned to the four groups in roughly equal numbers of 160 individuals each. All the patients had an assessment of their fatigue and physical function at the start of the trial and a year later at the end of the trial.

The results were that average fatigue and physical function scores had improved more after CBT and GET than after either pacing or standard medical care alone. The PACE trial found that pacing has no benefit but that up to 60% of patients with ME/CFS benefited from CBT and GET. This counts as being moderately effective treatment.

This was a trial for adults so the results may not be applicable to children and it did not include those patients who were housebound. Further research is urgently needed to address the needs of these two groups.

Serious adverse reactions to treatment were recorded in two pacing patients (1%), three CBT patients (2%), two GET patients (1%) and two in the SMC-only group (1%). Let me say something about what adverse reactions mean here. Everyday things – like getting cold or flu, being in a car accident or even falling over the cat and gashing your knee – that happen to occur within a study time frame count as non-serious adverse events but not reactions to trial treatments. Serious adverse reactions were, for example, someone taking to their bed as a response to a trial treatment. Of the 10 serious adverse reactions recorded, nine were only "possibly related" to a trial treatment and only one was "probably" a reaction to a trial treatment and that was an adverse drug reaction in someone in the standard medical care alone group. All in all, this is very convincing evidence that all these treatments are safe.

So why have so many patient groups including the charity involved in the design and implementation of the trial, condemn the findings? They said that the results were at odds with numerous patient surveys, for instance one for AfME in which some 50% of patients reported harm from graded exercise therapy.

There are two problems here. One is about science. Research is about coming up with a hypothesis and then trying to knock it down. Sometimes what you believe to be the case (the hypothesis) gets overturned. Long held, cherished and utterly plausible ideas are regularly demolished by evidence. This can be incredibly disappointing but you have to move on and ask the next question, not constantly keep asking the same one in the hope that eventually you will get a different answer.

The other problem has to do with surveys which usually involve a self selected sample of the population and can produce highly biased results. For instance, responders might only be those people for whom a particular treatment hasn't worked whereas those for whom it has worked, haven't bothered to be involved. When respondents to one of these surveys were followed up, especially those who reported they had become much worse as a result of graded exercise therapy, it turned out that some had been sent to gyms or other inappropriate places or hadn't had the sort of supervised, careful therapy from experts that was a feature of the trial and which should be offered to ME/CFS patients.

Some people also said that the trial was meaningless because it excluded those with a neurological disease, therefore could not have contained anyone who had ME since this is classified as a neurological disease. This is a bit silly because why would you design a trial that excluded the very patients you wanted to study? The problem arises from a line in the so called ‘Oxford criteria' which were used to assess eligibility for the trial and says ‘those with proven organic brain disease' should be excluded. This means those with conditions like dementia, multiple sclerosis and Parkinsons, not ME/CFS. The choice of the Oxford criteria, rather than the CDC (an American measure) or Canadian criteria was also condemned since some people say that using these allows those with fatigue from causes other than ME/CFS to be included and therefore those that got better were not people who had ‘real' ME. However, the Oxford criteria excludes anyone who has an alternative cause for their ME/CFS symptoms. The researchers also assessed all patients to see if they met alternative definitions of ME/CFS. One definition, according to the London criteria for ME, based on Melvin Ramsay's original description of ME from the Royal Free hospital and the other according to CDC guidelines. The results were the same in these groups. As well as using the Oxford criteria 67% of patients also met the International CFS Criteria and 51% the London ME Criteria.

What does this mean for treatment? CBT and GET are moderately effective for six out of every ten adult patients. They are likely to be effective in children but no one knows this for sure until further research is done. They are safe but only in the hands of therapists who are properly qualified. Finally, the NICE guidelines are not due for revision until 2013 and NICE have recently confirmed that they will not be altering them until then.

The nub of patient reaction to this seems to rest on an implication - which is why so many found some of the newspaper headlines so offensive - that the way they get better must say something about the cause of their illness. So, for instance, if CBT works for you, it must mean that ME/CFS has a psychological cause or if graded exercise therapy works, it must mean you are lazy. I find this completely baffling. I've worked a lot with cancer groups who campaign to have CBT as part of their treatment because it helps them feel better. No-one would dream of suggesting, I hope, that their cancer was a psychiatric disease.

I sit on the Council of the MRC (although I joined it after the PACE trial was approved) and I'm delighted that a further £1.5 million is going to be made available for ME/CFS research by the MRC. Contrary to what is claimed on message boards, there are strong voices, including my own, speaking up for the need for ME/CFS research within the MRC, which must include work on both causes and better treatments. I look forward to telling you the results of this research in the future.

The therapies are defined as:

  • Cognitive behavioural therapy (CBT) - A clinical psychologist or specially trained nurse, helps the patient to understand how their symptoms are affected by the way that they think about and cope with them and encourages them to try out increasing their activity.
  • Graded exercise therapy (GET) – A physiotherapist helps the patient to try a gradually increasing tailored exercise programme which takes into account the individual patient's symptoms, fitness, and current level of activity.
  • Adaptive pacing therapy (APT) – An occupational therapist helps the patient to match their activity level to the amount of energy they have, aiming to help the patient adapt to the illness rather than assuming they can gradually do more.



Esther Crawley was a Guideline Development Group member of NICE CG53 in 2007 which mandated CBT and GET as treatment for ME. I thought many people feel that NICE guidelines were damaging and harmful and are trying to get them revised. EC was a member of NICE GDG. She now claims doctors have to give CBT and GET because of NICE - but in fact she wrote them!

Esther Crawley is involved with MAGENTA, regards CFS/ME as tiredness, involved with SMILE and Lightening Process and Paediatric surveillance study. Esther Crawley complained to the GMC about Dr Speight to have his licensed removed.

http://forums.phoenixrising.me/inde...evalence-study-funded-by-action-for-me.44622/

http://forums.phoenixrising.me/index.php?threads/gmc-suspends-nigel-speight.44204/

Stephen Holgate's bio (Chair of CMRC) forgot to mention:

http://forums.phoenixrising.me/inde...-listed-as-involved.47082/page-16#post-772689

http://forums.phoenixrising.me/inde...arch-collaborative-uk-cmrc-tymes-trust.32302/

I repeat this MEGA study is toxic if the:

1.Criteria not resolved
2. Involvement of Esther Crawley/Peter White not removed.
3. Other charities outside the compromised AFME and AYME alliance are not involved.

It is very simple to ensure this study is beneficial for patients but they are refusing to improve it. This is a CON!

There are huge conflicts of interests here which have not been disclosed and they have been involved with each other closely to the detriment of ME patients for years.

As previously advised this MEGA is potentially X 20 as damaging as PACE if these issues not resolved.
 
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Messages
87
I regularly use the AYME forum to keep in touch with other parents with children with ME/CFS and am surprised that there is no mention of MEGA anywhere on the site. So this is not being pushed to parents to show any support.
 

RogerBlack

Senior Member
Messages
902
http://apps.charitycommission.gov.uk/Accounts/Ends59\0001082059_AC_20151231_E_C.pdf - is the 2015 accounts of AYME.

While it is understandable that not all money spent as part of a charities work can be directly attributed to that work, it is perhaps notable that out of the 200K incoming, 150K was spent on 'charitable activities', and 50K on raising funds.

Out of the 150K charitable activities, only 22K was actually spent on services to members.

This may be a highly misleading figure for a number of reasons.
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
3. Other charities outside the compromised AFME and AYME alliance are not involved.
It now looks like both the ME Association and ME Research UK are represented - at least there are bios for both listed on the MEGA site:

ME Association: Represented by Charles Shepherd www.meassociation.org.uk

The ME Association has been involved with all aspects of the illness - benefits, education, management, media, politics, research, services, support - for well over 30 years. Parliamentary work includes forming part of Secretariat for the All Party Parliamentary Group on ME at Westminster, membership of the Forward ME Group, membership of the Chief Medical Officer's Working Group on ME/CFS and the Medical Research Council's Expert Group on ME/CFS research which is now the CFS/ME research Collaborative. The MEA is part of the Department of Work and Pensions Fluctuating Conditions Group, who have made wide ranging recommendations regarding changes to the way eligibility for the Employment and Support Allowance is assessed. Research involvement includes supervising all the research that is funded by the MEA Ramsay Research Fund - in particular the establishment of an ME Biobank for blood samples at the Royal Free Hospital in London.

ME Research UK: Represented by Dr Neil Abbot http://www.meresearch.org.uk/

ME Research UK’s primary aim is to commission and fund biomedical research into the causes and consequences of ME/CFS. This is an urgent challenge and, to date, the charity has invested £1.4 million in 40 specific biomedical projects, mainly in the UK but also in Australia, Canada, Belgium and Sweden. ME Research UK also acts as an information resource for patients, researchers and healthcare professionals, raising awareness of the need for biomedical research and encouraging researchers to get involved. It is therefore a member of the UK CFS/ME Research Collaborative, and the Countess of Mar’s Forward ME Group, and is part of the steering group of the UK ME/CFS Biobank which it helped to establish in collaboration with the other major charities.
 

Yogi

Senior Member
Messages
1,132
Invest in ME (IIME) who I am sure nearly all would agree are the most trusted UK charity by ME patients for research are not involved.

In fact they have called this MEGA out for what is.

IiME Statement September 2016
We have been asked our opinion on the so-called MEGA study which patients are being asked to support by signing a petition.

From the little information we can ascertain -

We believe this will, if it gets accepted, suck away all funding for ME research for the next few years and give an impression that something is being done that will produce benefits for people with ME.

Yet we do not have confidence that this will lead to any effective remedy for people with ME.

A lot of data is proposed to be collected on a broadly defined patient cohort.

What is this data being used for?

It is stated –

“If we do this, we think we may be able to develop new treatments. We also think we may be able to target treatments more effectively for those that will benefit.”

We wonder what treatments they are thinking of developing whilst including those investigators who believe that ME is a faulty illness belief amenable to changing one’s thoughts.

We feel the petition has no other meaning but showing an element of patient public involvement.

And we also wonder if this proposal has already been accepted by some in positions of influence and that this petition may be mere cosmetics rather than substance.

There is no description of how “ME/CFS” patients are diagnosed before entry. Are there enough trained doctors to diagnose 12000 ME patients in a consistent way or can anybody with unexplained fatigue put themselves forward?

This resembles the shambles of the PACE Trial again and patients are already falling for it.

The history of MRC policy toward ME does not engender trust – numerous “expert” panels that produced nothing, PACE Trial funding, funding of research into other illnesses such as Sjogrens under the banner of ME research – yet we are still no wiser, patients are still ill.

We have already requested that the MRC refuse to allow grant applications from, or provide funding to those investigators who were involved in the flawed PACE Trial. This project proposes some of those behind PACE or supporting it will be involved.
We have no confidence in these people.

Like a sinkhole we feel this will suck away available funding for ME - and also remove many years of additional opportunity for good research.

We feel this is yet another way that patients will be given a line that something is happening – yet based on the experiences of the past it will be just more years waiting – and then little to show for it other than to benefit some whom we feel should not be involved in research into ME and some organisations.

Having scarce funding sucked away like this is one thing – losing more lives to it through delays is another and we cannot accept that.

This research will take years and require so much further analysis that it is difficult to see how it benefits patients any time soon.

We cannot support this.

http://www.investinme.org/IIME-Newslet-1609-02.htm
The severe are represented by 25% ME Group and are also not involved with MEGA. Only they truly represent the severe patients. MEGA will exclude the severe and no clear non-politician answer has been given regarding the severe by MEGA.


AFME will represent the four patient charities including MEA and MERUK as has been clear throughout. Therefore MEA and MERUK will not be equally involved as one would have expected.


Action for M.E.: Represented by Sonya Chowdhury
Sonya is Chief Executive of Action for M.E. and represents the four patient charities involved in the UK CFS/ME Research Collaborative Executive Board on the MEGA team. Sonya has worked with Action for M.E. for just over four years and has direct experience of M.E.

I have however supported MEA in the past but am increasingly concerned about their judgement and their unequivocal support and recommendation of MEGA despite the red flag warning signs.
 

Cinders66

Senior Member
Messages
494
THE CMRC is going to approach this the same way everything since 2007 or whenever they started organising broad church groups. We on here with ME don't trust AYME or Esther Crawley for patient selection and arguing for moving outside recruitment from fatigue clinics but maybe if the IOM report was used and we can still secure agreement to enrol a meaningful severe and entrenched cohort and that they delve deep so this reveals meaninful things about the clusters they find it will be ok as a worthwhile project but only if it is A uk project till 2022, not THE UK cfs/ME project until 2022.

I hope (but don't expect it to come from the charities) lobbying in UK will begin for a step up on funding and RFA commitment and attempt to incentivise research across areas, especially severe ME IMO) as Norway is doing so MEGA is just one strand in a uk effort across the years ahead. I personally will wait for final protocol (and this is taking long time already for a project, bare bones conceived in 2008) rather than obsessing on this I think.
Crawley looks set to stay and it isn't surprise, she is deputy of CMRC and AYME advisor, they won't throw her out will they.
 
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2,125
I regularly use the AYME forum to keep in touch with other parents with children with ME/CFS and am surprised that there is no mention of MEGA anywhere on the site. So this is not being pushed to parents to show any support.
Out of interest what are they saying about MAGENTA and FITNET on AYME?
I'm assuming as EC is the medical advisor she's being made out to be wonder woman particularly as she and her team have "explored the causes of CFS/ME in children and continue to develop and investigate new treatments."
o_O
 
Messages
87
Out of interest what are they saying about MAGENTA and FITNET on AYME?
I'm assuming as EC is the medical advisor she's being made out to be wonder woman particularly as she and her team have "explored the causes of CFS/ME in children and continue to develop and investigate new treatments."
o_O
To be honest there is very little up to date information on the official site. The last research news was 2015 Report "What matters to children with CFS/ME. A conceptual model as first stage in developing a PROM" This was another Dr Crawley report. There has been an article with her photo on the front page for a few months following a promotion but I notice this appears to have gone. Magenta and Fitnet are not mentioned- at least I can't find anything. There has been a little discussion by parents about Magenta as you can imagine but I don't know of anyone actually taking it up- certainly no one on the forum is admitting it. I know of a few that declined the option and did not feel pressured in any way to take it up.
Its a very gentle site with a bit of signposting to useful education/school information and a place for isolated souls (parents & kids) to chat.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
So here are the biomedical crew, or those with no obvious BPS role (AFAIK). It's not a bad-looking team ;)

Summary:
  • Professor George Davey Smith is a clinical epidemiologist
  • Dr Warwick (Rick) Dunn is a Senior Lecturer in Metabolomics
  • Professor Stephen Holgate is MRC Clinical Professor of Immunopharmacology
  • Professor Maria Fitzgerald is a neuroscientist
  • Professor David Ford is Professor of Health Informatics
  • Professor James Horne is an (emeritus) Professor at Loughborough ...involved with various cross-disciplinary neuroscience initiatives.
  • Professor Julia Newton
  • Professor Paul Moss ... researches the application of translational immunological research in the study of human disease.
  • Professor Andrew Morris is Professor of Medicine... (Big Data projects)
  • Professor Caroline Relton is a professor of Epigenetic Epidemiology
  • Professor Colin Smith is Professor of Functional Genomics
  • Professor Chris Ponting is Chair of Medical Bioinformatics

I'm afraid this does not put my mind at rest. If you narrow this list down to those who actually have any experience of ME/CFS what you have is one person, Julia Newton. So we have one expert in ME/CFS who supports a view of ME/CFS as a biological disease. Although she has to be careful because in the UK that is a difficult position to hold in a research and clinical environment dominated by those aggressively promoting the psycho-social model. Contrast that to White and Crawley as the other two so called experts, who have the backing in the UK that Newton does now, who's every action is to promote the psycho-social model of ME/CFS - and history tells us that the charities involved with back them up too. Indeed, one of the two charities is advised by Crawley, which is obvious conflict of interest.

Except Newton, no one can expect those in the list above to know anything about ME/CFS at this stage, they are totally unable to challenge anything White and Crawley and the charities say. There is no balance to the "expert" ME/CFS opinion that is involved in the study.
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
There is no balance to the "expert" ME/CFS opinion that is involved in the study.
So first up I agree MEGA is lopsided in its choice of mecfs experts: it's very much the UK view which is out of step with the US, and quite a bit of Europe too, and I think that's a real issue.

On the other hand - apart from case definition, which needs to be nailed down - I'm not sure how much influence the likes of Esther Crawley will have on the omicists. Take a look at the blog by genomics Prof Chris Ponting: it's very clear he's trying to sort out the molecular biology. He, and others on MEGA are experts in their field and focused on the biology. I'm not sure he's looking for input from Crawley to help with a genomics study.

Maybe because of the way the BPS view has dominated a small UK field we miss out that there's a lot of high quality research going on in other areas where scientists freely and frequently disagree, and don't feel the need to adopt a particular viewpoint.
 

RogerBlack

Senior Member
Messages
902
Maybe because of the way the BPS view has dominated a small UK field we miss out that there's a lot of high quality research going on in other areas where scientists freely and frequently disagree, and don't feel the need to adopt a particular viewpoint.

I truly hope you're right.
I guess it's that the attitude of 'meh - maybe it'll be better this time' is hard to take of a once-in-a-decade type funding opportunity (in the UK at least) of a study which will possibly heavily drive UK NHS and benefits policy for the next decade.

Some of us don't have that many more decades.

Yes, this study clearly has scientists which are not traditional BPS people on.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
So first up I agree MEGA is lopsided in its choice of mecfs experts: it's very much the UK view which is out of step with the US, and quite a bit of Europe too, and I think that's a real issue.

On the other hand - apart from case definition, which needs to be nailed down - I'm not sure how much influence the likes of Esther Crawley will have on the omicists. Take a look at the blog by genomics Prof Chris Ponting: it's very clear he's trying to sort out the molecular biology. He, and others on MEGA are experts in their field and focused on the biology. I'm not sure he's looking for input from Crawley to help with a genomics study.

Maybe because of the way the BPS view has dominated a small UK field we miss out that there's a lot of high quality research going on in other areas where scientists freely and frequently disagree, and don't feel the need to adopt a particular viewpoint.

Ponting's plans look good and I'm sure there are other plans to do good stuff from others involved which I'm likely to support, but the question of who the disease experts are is pretty core, as is the case definition that selects participants. What if we fail to include enough genuine patients to find something worthwhile. No one will ever look again on this scale if they don't find something significant enough so getting patient selection wrong would be catastrophic.

And then there is the issue of patient representation - I think that is of particular concern as this study is going to involve 2000 children and it increases the influence of dodgy charities.

And then we have issues over 12000 patients (currently including many with mental illness rather than ME) providing info on mental health surveys which I'd bet will get analysed and published first. This will get done under the label of ME/CFS and these "findings" will be taken to apply to all of us. This will mean Crawley and other BPS people applying for loads more funding for psycho-social research and getting it off the back of this project. We'll never be rid of it if this goes ahead as is.

Problem is that the potential good elements of the study do not nullify the bad elements in the study. They simply co-exist. I am unconvinced the trade off is worth it.