Petition: Opposing MEGA

[batteredoldbook]

Like Feynman's Cargo Cult, we can wonder for another full 30 years why the planes don't come. We can wonder why M.E patients are left alone, in pain in the dark for the simple want of truth. Alternatively, we can a build a broad, fully inclusive context where the very real abuse of both medical researchers and people with M.E is challenged, where questions are welcomed and where medical and patient communities commit to moving science and good treatment forward. It can be done.
It can be done.

 

[Jonathan Edwards]

Quite possibly the many or few hypochondriacs who were in the trial didn't increase activity levels because, in short, they're hypochondriacs, and as a consequence anything they perceived as potentially harmful to or even just incompatible with what they imagined to be their already parlous state of health was studiously avoided. Graded exercise would surely be something that would ring alarm bells with most hypochondriacs.

Similarly, CBT would presumably have been fairly unsuccessful in improving the hypochondriacs' functioning, if we are to place any value on criterion B of the definition of hypochondriasis in DSM-IV:

" B. The preoccupation persists despite appropriate medical evaluation and reassurance."

Yes, this would be my thought. Hypochondriacs crave medical attention but it never does them any good. I have to stress that my speculation about a proportion of patients in clinics not actually having the disease in question was purely a speculation. The real problem is that the clinicians concerned often do not seem to see it as relevant to make a distinction so we have no idea where we are. The basic rule is that if there is possibility of bias you need to do all you can to avoid it, otherwise you have uninterpretable research.

 

[user9876]

Yes, this would be my thought. Hypochondriacs crave medical attention but it never does them any good. I have to stress that my speculation about a proportion of patients in clinics not actually having the disease in question was purely a speculation. The real problem is that the clinicians concerned often do not seem to see it as relevant to make a distinction so we have no idea where we are. The basic rule is that if there is possibility of bias you need to do all you can to avoid it, otherwise you have uninterpretable research.

With large scale research like this with broad guidelines wouldn't you need to think through possible subgroups and have sampling strategies to make sure they are sufficiently represented. Two things worry me about the talk of broad guidelines and recruitment from clinics; the first is how co-morbid diseases are dealt with and they don't seem to address this problem. The second is the sampling strategies to ensure a good mix - without this it will be hard to interpret much. But again no talk of this at the moment it feels like conducting an opinion poll by asking people who walk into waitrose (a supermarket).

 

[Cinders66]

One thing that interested me reading through Esther Crawley's 2010 talk, is some of the symptom phenotyping she's done with kids. She found some have this cluster, some another, some another, but her housebound kids are likely to have most/all clusters. That's why I think severe ME in its own right is a group that deserves to be a proper part of any study major study. If theres a generic vulnerability to higher burdened or more severe ME it needs to be understood, if there's muti genetic risks/ flaws ( I'm not a scientist to use proper language) that needs to show. Ofcourse we know bad management has been found to be why many severe became bad, (Pheby et al) but Esther, in newly ill Kids must be seeing heavily burdened vs lighter burdened robust vs fragile and we need to know why and if indeed those many cluster kids more likely to become severe, which seems likely

 

[Jo Best]

Alternatively, we can a build a broad, fully inclusive context where the very real abuse of both medical researchers and people with M.E is challenged, where questions are welcomed and where medical and patient communities commit to moving science and good treatment forward. It can be done.
It can be done.

It certainly can be done. It is being done. Invest in ME Research Centre of Excellence projects, facilitated by the charity's International Conference and Biomedical Research into ME Colloquium, founding members of the European ME Alliance forming European ME Research Group. Just this month, Dr. Jo Cambridge has been over to Sweden and her PhD student colleague Fane Mensah is in Florida at IACFS (thanks to a travel grant from US org. Solve ME/CFS) where Dr. Vicky Whittemore of NIH said she really liked what Invest in ME is doing in UK. That news is on this page - http://future.cofeforme.eu/ce-news-1610-032.shtml

 

[lilpink]

One final post to thank those who have defended me and to perhaps leave you all something to think about. This computer work is not really not helping so I will be taking a long rest from it.

Thanks to Countrygirl for

"@lilpink I interpret 'grapevine chatter' to be a possible euphemism for 'I-have-a-very-good,-reliable-source-with-a proven-track-record-who-has-to-remain-anonymous-but-wants-to alert-you-to-important-information.'

I don't know if I am correct in this case, but I suspect so. We do well to consider such information when it is posted here from a previously-proven reliable poster.

This is very different to rumour-mongering.

It is wise not to throw the baby out with the bath water."


And thanks also to Jo Best for

"Oh no, please don't go, I've learned so much from your posts."

********


I was about to post this before the interruption so here you are –

"Snowdrop said -Is it possible to give NOD a closer look? ie How is data collected what is being said about the data in terms of findings?"

AND

Trish Rymes said in General ME/CFS News " ' How much will MEGA cost? And an alternative proposal

"The MEGA study wants to study 12000 people""


From http://www.meaction.net/2016/05/18/uk-plans-worlds-biggest-biomedical-mecfs-study/ The group, called the ME/CFS Epidemiology and Genomics Alliance (MEGA), intend to perform a genomics study of at least 10,000 adult and 2,000 child patients with ME/CFS, plus controls.


from the MEGA petition https://www.change.org/p/support-th...ation-to-major-uk-research-funders/u/18056402 "To do the genetic studies that we want to do, we think we need to recruit at least 10 thousand adults and 2 thousand children. The only way to do this is to recruit patients through NHS clinics throughout England. England is the only place in the world that can collect this large number of patients in a short time frame.

Why pick this number of patients?

Well, this number of patients is almost identical to the number of patients with data already stored in the National Outcomes Database, data from questionnaires that include - HAD, Chalder Fatigue Questionnaire, MOS (SF-36), Visual Analogue pain scale rating, Self-efficacy scale, as well an employment data. So the new data could be compared/conflated with this NOD data set - to perpetuate the BPS model.

From the MEGA petition - "Psychiatry needs to be there to complete the big picture yet it is just one minor aspect. MEGA will always be a Big Data ‘omics study, and will never be a psychiatric study."

Hmm, maybe not because they have their psych data already, at their fingertips, collected from their clinic cohort who may, or may not, actually have ME.

Why spend all this money on the MEGA study?

NB However many millions of £s the MEGA study costs it will be a drop in the ocean compared to the billions in savings to government in excluding ME/CFS from being a legitimate biomedical illness. I would draw your attention to this article by a leading health economist, Martin Knapp at the LSE (and the IoP) who is absolutely central to advising on the governments strategy on limiting care to MUS patients. http://ebmh.bmj.com/content/15/3/54.extract - Mental health in an age of austerity by Martin Knapp. In it he says -

"Turning to interventions with a more direct effect on public sector expenditure, CBT for people with medically unexplained symptoms in primary care (who account for almost one quarter of all consultations in primary care) has been found to be highly effective. A review of trials concluded that CBT is effective. The result is lower NHS costs (from reduced GP consultations, attendance at A and E and other hospital consultations and reduced prescriptions) as well as lower absence from work. Total savings of £1.75 for every £1 invested were calculated for a comprehensive programme, and £7.82 for every £1 invested for a targeted programme, with most of the pay-offs accruing to the NHS."

What we are now seeing is a highly effective and specifically targeted programme - spend a few millions on research to disprove biomedical links and reap the rewards in billions of savings by providing CBT instead of real help.

ALSO….. on the subject of hypochondriacs

Simon said - "If there was nothign really wrong with the hypochondriacs (by definition there isn't) then there's no reason why - unlike for mecfs patients - they couldn't increase actiity levels as the CBT/GET programmes aimed for."

AND

Aurator said - "Which leaves us with the many or few genuine ME/CFS patients"

All this talk of ’hypochondriacs’ isn’t really helpful IMO. Is the suggestion that patients with other MUS apart from true ME/CFS are all hypochondriacs and that we are the only ones, the ‘elite’ and the wrongly-discriminated against, because we aren’t? The medical profession actually proclaims (or confesses, depending on which way you look at it) that a quarter of GP consultations result in a MUS diagnosis – are we really to believe that a quarter of patients, 25%, attending their GPs are hypochondriacs or mentally ill? Or that SO many hypochondriacs have SO many multiple appointments to result in this figure? No, it’s complete nonsense and a measure of the arrogance, prejudice (pre-judgement) and discrimination of the medical profession. There are many reasons why patients can have MUS - they may have atypical presentations of common diseases, rare diseases, adverse drug and vaccine reactions (rarely considered), unknown not-yet-properly-elucidated diseases (like our own)….. or they may have several different problems, (Hickam's dictum), muddying the picture rather than a single cause (Occam's razor). To use just one example recently in the news we heard about the GP Dr Lisa Steen who tragically died from a rare form of kidney cancer, her symptoms disregarded as MUS. And not content with discriminating against women wrt MUS (NB they claim that up to 80% of these ‘mentally ill’ MUS patients are women) they’ve now managed to convince Age UK (from their document “hidden in plain sight”) that MUS is a common mental problem in the elderly and that medical professionals need to have this diagnosis at the forefront of their minds! The elderly – those who are almost certainly on multiple prescriptions with multiple interacting medical problems and conditions – will now be cast aside too. http://www.ageuk.org.uk/Documents/E...ght_older_peoples_mental_health.pdf?dtrk=true.

Come on ME community, I know you’re all exhausted, like me, but – WAKE UP and VOTE AGAINST MEGA!

 

[Wildcat]

.

Thank you for your post @lilpink .. it gives yet another dimension to the problems inherent in MEGA.

The National Outcomes Database (NOD) has not received much attention from patients so far.

We should be scrutinizing Esther Crawley's NOD, its methods and objectives.

NOD casts a whole new light on Esther Crawley's involvement in MEGA (and on her status and power as Vice Chair of the CMRC)....
.

 

[Countrygirl]

@lilpink Thanks for the post. Well worth a second read.

 

[barbc56]

So where is this said petition or has it even been written?

 

[Wildcat]

.
??? @barbc56 ... what petition? I don't understand what you mean?
.
Are you referring to NOD? ... If so, NOD is something that UK (not to mention international) patients have not been well enough informed of to respond to as yet. Sorry if thats not what you were referring to.
.

 

[JoanDublin]

So where is this said petition or has it even been written?

Its on the first post on this thread, but here it is again anyway https://www.change.org/p/opposing-m...ive&utm_term=des-lg-share_petition-custom_msg

 

[JoanDublin]

One final post to thank those who have defended me and to perhaps leave you all something to think about. This computer work is not really not helping so I will be taking a long rest from it.

Thanks to Countrygirl for

"@lilpink I interpret 'grapevine chatter' to be a possible euphemism for 'I-have-a-very-good,-reliable-source-with-a proven-track-record-who-has-to-remain-anonymous-but-wants-to alert-you-to-important-information.'

I don't know if I am correct in this case, but I suspect so. We do well to consider such information when it is posted here from a previously-proven reliable poster.

This is very different to rumour-mongering.

It is wise not to throw the baby out with the bath water."


And thanks also to Jo Best for

"Oh no, please don't go, I've learned so much from your posts."

********


I was about to post this before the interruption so here you are –

"Snowdrop said -Is it possible to give NOD a closer look? ie How is data collected what is being said about the data in terms of findings?"

AND

Trish Rymes said in General ME/CFS News " ' How much will MEGA cost? And an alternative proposal

"The MEGA study wants to study 12000 people""


From http://www.meaction.net/2016/05/18/uk-plans-worlds-biggest-biomedical-mecfs-study/ The group, called the ME/CFS Epidemiology and Genomics Alliance (MEGA), intend to perform a genomics study of at least 10,000 adult and 2,000 child patients with ME/CFS, plus controls.


from the MEGA petition https://www.change.org/p/support-th...ation-to-major-uk-research-funders/u/18056402 "To do the genetic studies that we want to do, we think we need to recruit at least 10 thousand adults and 2 thousand children. The only way to do this is to recruit patients through NHS clinics throughout England. England is the only place in the world that can collect this large number of patients in a short time frame.

Why pick this number of patients?

Well, this number of patients is almost identical to the number of patients with data already stored in the National Outcomes Database, data from questionnaires that include - HAD, Chalder Fatigue Questionnaire, MOS (SF-36), Visual Analogue pain scale rating, Self-efficacy scale, as well an employment data. So the new data could be compared/conflated with this NOD data set - to perpetuate the BPS model.

From the MEGA petition - "Psychiatry needs to be there to complete the big picture yet it is just one minor aspect. MEGA will always be a Big Data ‘omics study, and will never be a psychiatric study."

Hmm, maybe not because they have their psych data already, at their fingertips, collected from their clinic cohort who may, or may not, actually have ME.

Why spend all this money on the MEGA study?

NB However many millions of £s the MEGA study costs it will be a drop in the ocean compared to the billions in savings to government in excluding ME/CFS from being a legitimate biomedical illness. I would draw your attention to this article by a leading health economist, Martin Knapp at the LSE (and the IoP) who is absolutely central to advising on the governments strategy on limiting care to MUS patients. http://ebmh.bmj.com/content/15/3/54.extract - Mental health in an age of austerity by Martin Knapp. In it he says -

"Turning to interventions with a more direct effect on public sector expenditure, CBT for people with medically unexplained symptoms in primary care (who account for almost one quarter of all consultations in primary care) has been found to be highly effective. A review of trials concluded that CBT is effective. The result is lower NHS costs (from reduced GP consultations, attendance at A and E and other hospital consultations and reduced prescriptions) as well as lower absence from work. Total savings of £1.75 for every £1 invested were calculated for a comprehensive programme, and £7.82 for every £1 invested for a targeted programme, with most of the pay-offs accruing to the NHS."

What we are now seeing is a highly effective and specifically targeted programme - spend a few millions on research to disprove biomedical links and reap the rewards in billions of savings by providing CBT instead of real help.

ALSO….. on the subject of hypochondriacs

Simon said - "If there was nothign really wrong with the hypochondriacs (by definition there isn't) then there's no reason why - unlike for mecfs patients - they couldn't increase actiity levels as the CBT/GET programmes aimed for."

AND

Aurator said - "Which leaves us with the many or few genuine ME/CFS patients"

All this talk of ’hypochondriacs’ isn’t really helpful IMO. Is the suggestion that patients with other MUS apart from true ME/CFS are all hypochondriacs and that we are the only ones, the ‘elite’ and the wrongly-discriminated against, because we aren’t? The medical profession actually proclaims (or confesses, depending on which way you look at it) that a quarter of GP consultations result in a MUS diagnosis – are we really to believe that a quarter of patients, 25%, attending their GPs are hypochondriacs or mentally ill? Or that SO many hypochondriacs have SO many multiple appointments to result in this figure? No, it’s complete nonsense and a measure of the arrogance, prejudice (pre-judgement) and discrimination of the medical profession. There are many reasons why patients can have MUS - they may have atypical presentations of common diseases, rare diseases, adverse drug and vaccine reactions (rarely considered), unknown not-yet-properly-elucidated diseases (like our own)….. or they may have several different problems, (Hickam's dictum), muddying the picture rather than a single cause (Occam's razor). To use just one example recently in the news we heard about the GP Dr Lisa Steen who tragically died from a rare form of kidney cancer, her symptoms disregarded as MUS. And not content with discriminating against women wrt MUS (NB they claim that up to 80% of these ‘mentally ill’ MUS patients are women) they’ve now managed to convince Age UK (from their document “hidden in plain sight”) that MUS is a common mental problem in the elderly and that medical professionals need to have this diagnosis at the forefront of their minds! The elderly – those who are almost certainly on multiple prescriptions with multiple interacting medical problems and conditions – will now be cast aside too. http://www.ageuk.org.uk/Documents/E...ght_older_peoples_mental_health.pdf?dtrk=true.

Come on ME community, I know you’re all exhausted, like me, but – WAKE UP and VOTE AGAINST MEGA!

Excellent post and plenty to be concerned about in here. Hope you can have some time to recoup and thank you very much for all the info and insights. I've learned several new things from you.

I genuinely cannot see how ANYONE could sign their name to that Mega petition. Its got more holes than a colander. Its sort of like signing your name at the bottom of a contract when someone has a large sheet of paper covering all the print.... We definitely deserve much more respect than this.

 

[Snowdrop]

I think anyone who thinks MEGA might still be viable has probably stopped reading by now unfortunately.
There seems to be only a small group now moving the objections forward.

I think this is a profoundly important issue with dire consequences--is there any other venue where the objections could be aired in the UK that has broad access?

The BPS has known for some time the problems with PACE might see the light of day. I'm sure they have been in discussion with their liege lords what might be done next to keep CBT/GET as treatments for what they see as MUS.
This is not conspiracy thinking IMO, it's just business as usual.

Something to consider: https://www.researchgate.net/public...able_in_children_and_if_so_why_does_it_matter

paper by esther crawley and george davey-smith this is in the context of what is known as precision psychiatry/molecular psychiatry or just neuropsychiatry.

 

[batteredoldbook]

It certainly can be done. It is being done. Invest in ME Research Centre of Excellence projects...

Hi Jo.

Sadly I have not been able to form a relationship with Invest in M.E and the other UK charities I approached.

When I wrote 'fully inclusive' previously, I was thinking of Shepherd's "big tent" ...but much, much bigger. I will not be happy until I can attend an M.E conference that covers every single M.E charity, doctor, advocate, patient and researcher. I want to pig-out at an "all you can eat" buffet of science and thought but, the hurtful and harmful behaviour of the medical and M.E communities stands in my way.

The open wound between patients and medicine over M.E will have to be sutured at some point by someone. I wish them all the luck in the world. But right now, I wish for a Unified-UK-ME-Super-Conference.

Again, it can be done.

 

[Jo Best]

Ah ok @batteredoldbook sorry for misunderstanding. I don't see it the same way, but of course, we each have different experiences and perspectives. I see the harmful influence of the BPS model as a cancer to be cut out. It spreads further than ME. It seems to me a case of first they came for ME, and having got away with it so far creeping across over the past thirty odd years, they're now coming for everyone else to catch under MUS/PPS.

 

[batteredoldbook]

Ah ok @batteredoldbook sorry for misunderstanding. I don't see it the same way, but of course, we each have different experiences and perspectives. I see the harmful influence of the BPS model as a cancer to be cut out. It spreads further than ME. It seems to me a case of first they came for ME, and having got away with it so far creeping across over the past thirty odd years, they're now coming for everyone else to catch under MUS/PPS.

I think you are correct: there is something deadly here that has to be dealt with. I think you are also correct that the BPS model is spreading through medicine, unchecked. I have grave concerns but feel I made some progress when speaking to Simon Wessely about them.

However, my message, (and I really appreciate the chance to even speak it), is that the thing we have to cut out exists across both medicine and patients. I have seen it in both. I know it whenever and wherever I come across it because it hurts me so very much.

 

[Jo Best]

@batteredoldbook I think that's just humans for you. I've never seen it as patients v medicine. I think that's an artificial conflict deliberately contrived to divide and conquer. My own doctors were great. This was before the NICE guideline and fatigue clinics when GPs were allowed to use their professional judgement and when doctors either had a 'special interest' in ME or became specialists in the disease (most now retired or deceased). It's all gone so far off track that I think the only way is to forge a new path.

 

[eafw]

I think anyone who thinks MEGA might still be viable has probably stopped reading by now unfortunately.

I'm still reading, it pops up in my alerts.

To save you going back through my previous posts, I still think that our options are limited in reality:

1) MEGA goes ahead - with Crawley who will not be booted from CMRC just on our say-so - and turns into a fatigue study, maybe a good fatigue study, maybe a general mess and with no good patient (activist) input
OR
2) MEGA goes ahead- with Crawley who will not be booted from CMRC just on our say-so - only with a chance of some useful results coming out of it, if we have got our foot in the door and the scientists have at least a little bit of our perspective and input.

What is the likelyhood of the option 2, of CMRC/MEGA team appointing proper patient reps, making a shift towards testing more severes, and hence getting better data ? I don't know. Is it worth trying to push for this ? Right now I think so, we will find out over the coming months as more details emerge over who is doing what. We might hit a total brick wall, we might not. There is uncertainty at the moment, but in the real world we must work despite the presence of our enemies (long game on weakening their influence) and hope to make new allies as we go. We can but try.

 

[batteredoldbook]

@batteredoldbook It's all gone so far off track that I think the only way is to forge a new path.

I need to tell you that the M.E community hurt me personally far more than the BPS crowd did. In fact, the latter thought to come check on me, at a time when I believed all was lost.

I think Invest and their advocates have done much to redirect the flow of the river. It would not be overstating the case to suggest that M.E research was saved by the counter-balance that they worked so hard to provide. However, we know to our great cost, that overall, scientific truth is not served by bias. It is served by open, free, discussion and I believe it is now time for medical and m.e communities to provide a unified forum for it.

 

[Jo Best]

@batteredoldbook I'm sincerely sorry you've been hurt and I hear you.