Petition: Opposing MEGA

[eafw]

Yes but they do not wish to communicate with patients and have us involved in the design of the study.

I'm 50/50 at the moment as to whether it is lazy, half-assed, living-in-a-bubble incompetence, or flat out deliberate conspiracy to exclude. Neither is good but the first is potentially redeemable. We will see as things progress, their response to us should give us a better idea of the prevailing attitude.

 

[BurnA]

I'm 50/50 at the moment as to whether it is lazy, half-assed, living-in-a-bubble incompetence, or flat out deliberate conspiracy to exclude.

I doubt it ever crossed their minds.

 

[Wildcat]

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https://twitter.com/i/web/status/791361067733622784

Tymes Trust ‏@tymestrust
Tymes Trust

'All ME orgs should take a principled position and be able to explain it. We are not supporting MEGA. Full statement soon'.
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[charles shepherd]

Stephen Holgate is going to sort out dealing with comments on Phoenix Rising ? Looking forward to that!

Seriously though ( cause that was a joke )
What on earth would Stepehn Holgate know about websites and comments ?
It shows you how out of touch the CMRC is that they don't even have their own website.

I don't think Stephen knows anything about website design and production and I doubt if any of the -omic people on the MEGA planning group know anything about how to set up a website, or have the time to investigate and organise one right now

It's well outside my radar as well

But how many medical research studies that are still in the planning stage have websites with interactive blogs etc?

Not many…..

 

[Yogi]

I'm 50/50 at the moment as to whether it is lazy, half-assed, living-in-a-bubble incompetence, or flat out deliberate conspiracy to exclude. Neither is good but the first is potentially redeemable. We will see as things progress, their response to us should give us a better idea of the prevailing attitude.

That's fair enough. I started at 50/50 and with research and reading and awareness of these issues I am at 99% of the latter (malign and dishonest intent).

Read up on all the posts especially the last few and links with setting up the CMRC and 25% group, tymes and iime concerns at the beginning.

The CMRC did nothing to deal with those concerns and went ahead. AFME AYME (corrupt bps fronts) were already in bed with them to provide patient support.

 

[Yogi]

I don't think Stephen knows anything about website design and production and I doubt if any of the -omic people on the MEGA planning group know anything about how to set up a website, or have the time to investigate and organise one right now

It's well outside my radar as well

But how many medical research studies that are still in the planning stage have websites with interactive blogs etc?


Not many…..

Exactly.

How many medical research studies that are still in the planning stage have petitions for people to sign up before the details are provided.?

Can you name another study which started off with a petition? No??

I rest my case your honour!!

 

[eafw]

But how many medical research studies that are still in the planning stage have websites with interactive blogs etc?

Not many…..

How many research studies are asking for support and approval on change.org from a patient population that for YEARS has been neglected and abused by the medical establishment and their esteemed academic colleagues ? (not many)

They know there is a chasm to bridge here. I don't expect the scientists to do it, nor for Holgate personally to set up a website by himself, but part of their planning should have included IT and community roles, and especially a recognition that they have work to do to build some sort of trust with us. Even if it were something basic to start off, it's not hard, but there does seem to be an attitude problem there.

 

[Jan]

@charles shepherd are you not in the slightest bit concerned that this could turn into another PACE type debacle? I know it's a study and not a trial, but there's going to be an awful lot of data that will be dissected on these questionnaires, including details on anxiety and depression. I can see EC & co having a field day with that lot

 

[BurnA]

But how many medical research studies that are still in the planning stage have websites with interactive blogs etc?

Not many…..

I was talking about the CMRC in general, sometimes i get the impression you are so quick to make excuses you miss entirely what is being said, here. That's a pity.

It's not important that SH or any omics researcher knows how to design a website, what's important is that they recognise the need for one, then it can be organised. It's usually one of the very action items for any new organisation or venture. It definitely comes before raising a petition on the list of priorities.

 

[batteredoldbook]

Questions critical to research were specifically & publicly blocked at #CMRC2015. Pwme should not support researchers under these conditions.

 

[Yogi]

How many research studies are asking for support and approval on change.org from a patient population that for YEARS has been neglected and abused by the medical establishment and their esteemed academic colleagues ? (not many)

They know there is a chasm to bridge here. I don't expect the scientists to do it, nor for Holgate personally to set up a website by himself, but part of their planning should have included IT and community roles, and especially a recognition that they have work to do to build some sort of trust with us. Even if it were something basic to start off, it's not hard, but there does seem to be an attitude problem there.

Exactly. CMRC was born from the MRC. This is the largest research funder in the UK. they have IT departments. Notwithstanding that anyone including a child can set up a website.

Are we supposed to buy this nonsense?

I say again for the third time WE ARE NOT STUPID and we are not born yesterday!

 

[charles shepherd]

I was talking about the CMRC in general, sometimes i get the impression you are so quick to make excuses you miss entirely what is being said, here. That's a pity.

It's not important that SH or any omics researcher knows how to design a website, what's important is that they recognise the need for one, then it can be organised. It's usually one of the very action items for any new organisation or venture. It definitely comes before raising a petition on the list of priorities.

Sorry, I thought you were referring to the MEGA study site - as that is where the problem is at the moment and that's why I wrote to Stephen (who is actually on holiday right now) tonight

I'm doing these replies in haste - so apologies if I misunderstood your question

The CMRC is setting up a website and I understand that work is nearing completion

As with everything else, the work is done on a voluntary basis in addition to everything else that individual members of the Board are doing

It has been another long day - so I am now clocking off and not answering any more questions tonight!

 

[batteredoldbook]

Patients, charities, funding bodies and researchers should not associate themselves with a context where scientific debate is unwelcome and judgement is reserved indefinitely.
I oppose MEGA on the basis that the CMRC willfully chooses to leave the methodology that gave us pace, unquestioned and unjudged.

 

[Jan]

Fantastic comment on the Omega site

I've had this illness and been around the politics for too long now. It's not hard to smell a rat. Peter White and Esther Crawley are tainted, they simply cannot be trusted. Anyone involved with PACE or GET studies on children is not just questionable on a scientific basis but a moral one. Thousands have reported harm and their response is simply to ignore or gaslight. Whilst patients worked hard to obtain PACE data White worked hard to malign us, obfuscate, twist results and waste money protecting data, this is not the actions of someone dedicated to the scientific process. They offer nothing, instead of research this will be yet another drawn out period of anxiety for patients as we sit and wonder just what they will twist this time. They are peddlers of pseudoscience, an intellectual embarrassment, ideologically and career driven, no serious scientific study should ever wish to involve them. The fact that they are there out of contractual obligation is a horrific kick in the teeth to all of us who worked hard to expose PACE whilst they did nothing but insult us and lie. That this debate even needs to be had is shocking. Who can honestly say they're inclusion is a sound scientific one?

Paul Gadsden, London, United Kingdom
4 hours ago

 

[Jonathan Edwards]

I was thinking this may be off-topic but maybe not as it's relevant to the value of 'big data'. If there was some genetic predisposition would you necessarily expect that to result in the same group of symptoms and therefore the same diagnosis?

I'm thinking of fairly recent genomics findings that alterations to a single gene may underpin autism spectrum disorder, attention deficit-hyperactivity disorder, bipolar disorder, major depressive disorder, and schizophrenia.

Perhaps a more useful initial approach to big data would be epidemiological - e.g. something like scanning the scandanavian registries to see if a ME/CFS diagnosis clusters with anything else.

I absolutely agree. I suspect a good population based epidemiological study would be the thing to do first. It may not be so sexy though - which may be why in the past only the Scandinavians have tended to take the trouble to do studies like that.

 

[Jonathan Edwards]

Ah, I was confused because the 2014 progress report says:

Is a secondary health service different from a clinic? I also wasn't sure if the GP diagnoses were independently validated by CFS clinic consultants, or if there was any psychological assessment (as is mandated in most definitions). But it struck me a detailed discussion between MEGA and the biobank would be productive given the overlap in their approaches.

MEGA would have a standard operatinng procedure precisely to tackle this issue.

I do not know the exact details but as I understand it clinics were trawled as well to find severe cases because they wanted to have a cohort of severe cases and these proved very hard to get from their Norfolk population. The diagnoses were validated by consistent application of disease criteria by a member of a team with a very biological view of the disease. I think the team would admit that they had to compromise at least on severe case recruitment which is why if anything I am suggesting a study needs to be AT LEAST as rigorous as the Biobank approach.

I don't think standard operating procedures are of much use in the face of hassled NHS clinic consultants and junior registrars in Rotherham trying to keep their heads above water with service requirements let alone keep researchers happy. And if the consultants have quirky ideas about what constitutes real CFS they are unlikely to listen to operating procedures. OK, once a patient is identified they can be checked by criteria but the problem is who gets identified. I for one, during my career, refused ever to make a diagnosis of CFS because it seemed likely to end up with the patient being sent off to a pain clinic or CBT clinic run by people I did not trust. It is only since communicating on PR that I have begun to understand the existence of a core illness concept of ME and what it really means.

 

[trishrhymes]

I do not know the exact details but as I understand it clinics were trawled as well to find severe cases because they wanted to have a cohort of severe cases and these proved very hard to get from their Norfolk population. The diagnoses were validated by consistent application of disease criteria by a member of a team with a very biological view of the disease. I think the team would admit that they had to compromise at least on severe case recruitment which is why if anything I am suggesting a study needs to be AT LEAST as rigorous as the Biobank approach.

I don't think standard operating procedures are of much use in the face of hassled NHS clinic consultants and junior registrars in Rotherham trying to keep their heads above water with service requirements let alone keep researchers happy. And if the consultants have quirky ideas about what constitutes real CFS they are unlikely to listen to operating procedures. OK, once a patient is identified they can be checked by criteria but the problem is who gets identified. I for one, during my career, refused ever to make a diagnosis of CFS because it seemed likely to end up with the patient being sent off to a pain clinic or CBT clinic run by people I did not trust. It is only since communicating on PR that I have begun to understand the existence of a core illness concept of ME and what it really means.

This is fascinating - I think there must be a huge amount of poor understanding of ME in fatigue clinics and by doctors who simply don't have the time, interest or good quality information to enable them to understand and therefore reliably diagnose ME. I have noticed that some of the most dedicated researchers have turned to researching ME because they have a family member or friend with it.

It would be good if you could communicate your knowledge and experience and ideas to the MEGA team. I suspect they were much more likely to listen to a fellow professional than to a bunch of angry patients!

 

[Jo Best]

Statements By Professor Jonathan Edwards and Invest in ME - July 2013 - source - http://www.ukrituximabtrial.org/Rituximab news-July13 01.htm

My interest in ME/CFS was sparked when I was invited, unexpectedly, by IiME to the IiMEC8 Conference in May.

The meeting was impressive: not just professional science, but at a high level. I was particularly impressed that negative findings were given adequate weight.

It became clear to me that there was a community committed to identifying and encouraging the very best research in a difficult and neglected field.

 

[Simon]

I do not know the exact details but as I understand it clinics were trawled as well to find severe cases because they wanted to have a cohort of severe cases and these proved very hard to get from their Norfolk population. The diagnoses were validated by consistent application of disease criteria by a member of a team with a very biological view of the disease. I think the team would admit that they had to compromise at least on severe case recruitment which is why if anything I am suggesting a study needs to be AT LEAST as rigorous as the Biobank approach.

Thanks

I just checked with Dr Eliana Lacerda from the biobank who confirmed that while most cases came from GPs, some (non-severe) cases case from clinics including the Norfolk and Sulfolk ME/CFS service, the Department of Clinical immunology of the Royal Free Hospital and the CFS clinic from the Royal London Hospital of Integrated Medicine (RLHIM). Separately, the biobank have stated that severe cases were recruited via Greater London patient support groups.

Reply from Chris Ponting re sampe size:

Briefly: yes if we’re lucky then ‘sore thumb’ GWAS observations could be seen, but there is no chance of convincing funders to do a 1k patient GWAS. They’ve been burnt too frequently with under-powered analyses/grants previously. I also think that the observation that one associated interval can mislead is a good one: far better to have the power to find many associations so that you can find the shared biology among them. (Note that an interval commonly contains many [or even no!] genes. [could be non-coding regulatory region]) I also would guess that the observations seen from a (hypothetical) “clean” 1k would also be seen in a cohort made up of these 1k clean patients plus 10k others who are less well defined.

And interval is a linkage disequilibium chunk of DNA:

 

[Jo Best]

Thanks @Simon. Am I right in taking from this that Chris Ponting thinks it's worth spending ten times the amount of money and extra time needed to source and process samples?

I also would guess that the observations seen from a (hypothetical) “clean” 1k would also be seen in a cohort made up of these 1k clean patients plus 10k others who are less well defined.