Petition: Opposing MEGA

[A.B.]

@charles shepherd do you not see the danger White and Crawley redefining the illness, case definitions or symptoms in a manner that totally distorts the picture and gives the impression of there being a role for psychiatry and CBT/GET?

We have already seen how after PACE they tried to turn PEM into fear of exertion in that Chalder mediational analysis (and the conclusion that reduced fear of avoidance led to improvement in health was based on a statistical error).

It is likely they will decide what questionnaire to use when assessing symptoms, and therefore also how symptoms are defined and interpreted. They could easily insert questions that will lead to a narrative of health anxiety after exertion, or unhelpful beliefs about exertion, etc. This could also make it impossible to distinguish true health anxiety from PEM, blurring the picture and obscuring the link between biological factors that are related to PEM but not health anxiety. There are many ways they could distort the picture as CFS "experts".

Lumping together, redefining words in deceptive manner, bad questionnaires is what they do. I cannot comprehend how anything could think including them in an important project is OK. It's crazy!

 

[charles shepherd]

I think the horse has bolted. MEGA should have considered the impact their petition may have in the light of several aspects that have been discussed on this thread.

Jo

On the one hand, people are complaining that researchers are not interacting with and explaining their research proposals to the ME/CFS patient community

On the other hand they are complaining when a group who planning a very complex and costly research proposal provide preliminary information on various aspects of the study at a research conference, invite the public to express support for what is being proposed, and agree to provide regular email information to anyone who says that they are supporting the aims of the research

You just can't win!

 

[charles shepherd]

Your message would have been so much better without that paragraph.

I only added it because it is true!

 

[trishrhymes]

@charles shepherd I guess I'm one of the 'very vocal' people you characterise as wanting to 'stop MEGA dead in its tracks', so here's my response to your question.

I have never said I think MEGA is a psychiatric study. I think it is unfair to say this about everyone who signed OMEGA just because a few people initially were a bit confused about this.

I signed the OMEGA petition even though I didn't agree entirely with the emphasis in its wording because it seemed the only way to publicly draw attention to my disquiet about aspects of the organisation behind the study and the people it is using as experts on CFS/ME.

I have said I do not trust the biopsychosocial practitioners such as Dr. Crawley to be the ones who:

a) advise the group on the definition of ME or CFS or whatever they want to call it, or

b) advise the group on how subjects for the study should be identified.

Their track record tells me they cannot be trusted in either of these roles. I am afraid they will use their influence to make it a 'fatigue' study and use the muddied waters this throws up to bolster their own view of ME. I am also afraid they will seek to use the fact that the study will take many years as an excuse to say to government and medical agencies that they have the only 'proven' model of ME and treatment regime.
...

I think that if it is to be a study of ME, then it must include a representative sample of severe and long term sufferers, and must use an internationally recognised research definition of ME so that data can be added to other international research data and it can have a chance of providing a meaningful outcome.

While I applaud your efforts to get the current biobank samples included, a sample of 300 well characterised ME patients, some of whom are severe sufferers, included within a 12000 person study is too small to be significant. Chris Ponting says he needs thousands to get meaningful genetic data. Perhaps you could go further and suggest the whole sample for the study be done by expanding that existing resource using its experts. That I would support.

I have always said I would wholeheartedly support a genuine ME study run by biomedical scientists and advised by genuine ME experts such as yourself. This does not appear to be what is happening.

I do very much appreciate your efforts to rescue the study and turn it into something we can support, but I can't see how you can get rid of the influence of Crawley, et al. in the study design. They are simply too powerful. I'd be delighted to be proved wrong.
...

It seems a pity to divide us into 'for' and 'against' at this stage, and talk of people trying to 'kill off' the study.

It was the appearance of the initial petition asking us to support the MEGA study before the details had been decided that has upset so many of us. It did not give us the option of saying no, not this particular approach, but we'd like a good study.

It is unfair of them to ask very sick people to support a study that, as currently described, will not give many/any of us a snowballs chance in hell of being included or of having our version of the illness (severe and/or long term) studied.

It is a pity that some of us are being characterised as 'against' you. I certainly am not. I appreciate all you do for us ME sufferers.

 

[charles shepherd]

Everything that's happening in relation to opposition to MEGA is a direct consequence of the psych lobby completely destroying all faith in UK research. The situation is made worse by the fact we can contrast some of the best international research with the utter garbage coming out the UK. I know there are bad researchers in this field elsewhere, but the UK is the absolute pits (with some exceptions). If MEGA included none of these BPS supporters, and was purely biomedical and used better and tighter diagnostic criteria, as well as the biobank, then I'd support it. As I've said before, I was very happy to see Julia Newton on the list, and more people like that are certainly welcome.

Just out of interest :

Do you include the various biomedical research studies being funded by the MEA Ramsay Research fund as being in 'the absolute pits'?

Egs

Muscle/mitochondrial research X4:
http://www.meassociation.org.uk/201...e-of-the-mitochondria-in-mecfs-10-march-2016/

ME Biobank: http://cureme.lshtm.ac.uk

MEA Ramsay Research Fund:
http://www.meassociation.org.uk/research2015/current-research2015/

The MEA is primarily a patient information and support charity but funding biomedical research is also a high priority

 

[Countrygirl]

But I really do find it depressing to see that people are being asked to oppose this research on the basis that the use of various types of -omics to look for biomarkers associated with clinical phenotypes (ie sub-groups) of ME/CFS is psychiatric research when this is clearly not the case

Dr Charles Shepherd
Hon Medical Adviser, MEA

ME Biobank: http://cureme.lshtm.ac.uk

Unless I have completely misunderstood the arguments, this is not what is being said. No one is claiming it is psychiatric research. We are surely saying that the presence of two researchers who have inflicted considerable harm on the patients will spin the results to support their own psychiatric bias and by falsely claiming to be 'ME experts' will mislead the other brilliant scientists who have joined the study. We cannot trust them and with good reason.

 

[Ysabelle-S]

I'm not signing the MEGA petition, but I'm not signing OMEGA either. I prefer just to express my concerns about what we know so far. I think after more than three decades of life in limbo, plus a wasted university degree thanks to the scandalous BPS crowd hijacking funding, I'm entitled at least to my opinion.

 

[Jonathan Edwards]

What I still think about ME research in the UK is this despite my desperation: I would be (grudgingly) content if every single researcher in the UK would cease and desist from doing anything around ME research. NOT ANOTHER THING. I would be glad if they stayed away--found some new interest to pursue.

The UK is not the only place metabolomics etc can happen.

Perhaps this could be incubated at conferences like IIME.

I think this is a wrong analysis Snowdrop. There are groups in the UK working closely with Norway and the USA. Some of the very best epidemiology of ME has come out of the UK. Just because one group in the UK does not seem to get its act together I think it is a pity to deny that a number of people are working hard on your behalf. A number of senior scientists are giving their time completely for free because they think it is a worthy cause.

IiME are committed to getting good research done in the UK and have been very successful in getting things moving. They have become a much clearer focus for research than any in the US as far as I can see. If a large genetic and metabolic study can be set up in the UK in the right way it is much more likely to provide reliable data than anywhere else much (other than Scandinavia) because of access to population based cohorts. Studying self-referred cases is almost certainly no use to us, however much patients may want to contribute.

What I think the discussion should try to achieve is a sound clinical base for case selection. I have concerns about that, as do many others. Hopefully some progress can be made on that front.

 

[Ysabelle-S]

Just out of interest :

Do you include the various biomedical research studies being funded by the MEA Ramsay Research fund as being in 'the absolute pits'?

Egs

Muscle/mitochondrial research X4:
http://www.meassociation.org.uk/201...e-of-the-mitochondria-in-mecfs-10-march-2016/

ME Biobank: http://cureme.lshtm.ac.uk

MEA Ramsay Research Fund:
http://www.meassociation.org.uk/research2015/current-research2015/

The MEA is primarily a patient information and support charity but funding biomedical research is also a high priority

Well, Charles, I did say 'with some exceptions'.

 

[charles shepherd]

500 people's samples (some of which are from people with MS and healthy controls) - I don't know how many people with ME that leaves or how many of those are severely affected but it doesn't really matter. It's a tiny drop in the bucket of 12,000 samples.

But I find your question surprising as it seems to ignore the main issue opponents of MEGA, as it is currently constituted, have - the involvement of White and Crawley and the lack of transparency. So, my answer is 'no', while White and Crawley are involved, I would not want to see this research proceed.



I think it is not at all helpful for you, an advocate for people with ME, to be saying this and by inference implying that opposition to MEGA is coming from a small bunch of radicals.

I am a 50 year old, law-abiding mother with ME and with a son with ME. I am not some radical. But neither am I stupid or ill-informed. I have been reading about this illness most days for several years now. And, even here on the other side of the world, I have seen and personally experienced the harm people like Crawley and White have inflicted. I think it is perfectly reasonable to object to any enormous ME research project that involves them.

Perhaps you can explain to us why this research (or something like it but better thought out) could not proceed without White and Crawley?

At the moment it's impossible to conclude what view the wider ME community is taking about the MEGA study

There is very vocal opposition on the internet (from a few individuals in particular!) but I know from personal emails that there are people who support the study who are reluctant to join these discussions because they feel they will be shouted down

At the last count we had 7 members of the MEA who had contacted the MEA about the study - both in support and in opposition

The petition in support of MEGA, which has not been mentioned or actively publicised by the MEA apart from on the day of the conference, has attracted almost 2,400 signatures so far

The MEA values what it's members have to say and we listen to them. We are therefore asking them to let us know what they feel about the MEGA proposal (in the current state of discussion) in the November issue of ME Essential magazine

 

[charles shepherd]

@Esther12 Yes, the scandalous history cannot be wiped out. It has done terrible damage. The patients cannot just move on and suddenly start trusting. Trust usually has to be earned. There's been no attempt to earn our trust, no apologies. For MEGA to work, the UK would have to take a leaf out of Norway's book and issue an apology to ME patients, complete with a promise to focus on biomedical funding and to abandon the BPS model. Anyone associated with the BPS school would have to be dropped from MEGA. Even if the study is delayed while new and better people are recruited, it would be better than the current situation.

Did you read my article in the Daily Telegraph where I said, very clearly, that it was time for doctors to apologise to their ME patients:

http://www.telegraph.co.uk/news/hea...octors-to-apologise-to-their-ME-patients.html

 

[A.B.]

The MEA values what it's members have to say and we listen to them. We are therefore asking them to let us know what they feel about the MEGA proposal (in the current state of discussion) in the November issue of ME Essential magazine

Will you inform people that White and Crawley are involved? If not, patients will not be able to make an informed decision. It would be shameful to manipulate patients into supporting this project by omitting important information!

 

[Wildcat]

.
And people oppose this research because recruitment from the NHS CFS clinics excludes so many groups of ME patients.
.

 

[BurnA]

I only added it because it is true!

Perhaps you could elaborate about the small vocal group who are very fixed in their opposition?

 

[Jonathan Edwards]

I would however be interested to read people's views on the question I pose - which is whether they would still want to stop this research dead in its tracks if it included the ME Biobank samples, including those with severe ME/CFS (who meet Canadian and Fukuda diagnostic criteria)

Dear Charles,
I agree with others here that it is a misrepresentation to suggest that the response to the MEGA petition with a counter petition is an attempt to stop the project in its tracks. That is not what is said or intended as I understand it. I think the original petition was disingenuous and a response is entirely fair.

With regard to the question about the Biobank material. Whether this is included will be a matter of practicality but I would hope it would be, since that was the whole point of collecting it. My own calculations indicate that a cohort of about 1,000 ME cases would be appropriate, based on previous genomic publications and the Biobank goes quite a way to that. What I think is more important is that any study of the sort planned by MEGA should have as high quality patient selection and documentation as the Biobank. Large scale studies of this sort can be completely useless if cohorts are not properly selected. The subjects and controls have to be matched for race in some detail, and also need to reflect true demographics. CFS clinic lists are unlikely to be much help to us.

My own real concern here is that the team shouldn't include those who have demonstrated that they do not understand basic research methodology. I will not name names but anyone who still supports the PACE study after all that we now know from patients' analyses will fall into that category. I have no preconceptions about any hypothesis being better than another (although I do like hypotheses to be coherent!) but individuals who have shown themselves not to understand scientific method should not be allowed to prevail for political reasons.

 

[charles shepherd]

Dr Shepherd, do you realise how much you sound like Wessley et al in this statement? We are vocal because we are so scared and desperate and you condemn us for it. I have been making myself more and more ill since the MEGA announcement, spending way too much time online and giving myself severe eye strain and migraines every day. Why? Because I feel like nobody is speaking up for the patients, we have to do it for ourselves. It's not a small minority objecting to it though is it, at nearly 1000 signatures? Plus a whole patient organistion, Iime and Johnathon Edwards.

How on earth do you expect us to trust anything with BPS/PACE people in it, please tell us? Are we supposed to ignore the struggles and hard work of the last 5 years and just roll over and accept they will remain a part of the ME landscape? Over my dead body, and I probably will be dead before we finally get rid of these wicked liars.

I will end by saying that this is not a personal attack, I admire and respect all the hard work you do for the MEA.

Jan

I'm not condemning anyone for being vocal in support of what they believe

I am sometimes very passionate for what I believe in!

I was trying to make a simple point that this discussion isn't really going anywhere

The points about Peter White, Esther Crawley, PACE trial etc are well known and being preached to the converted

Equally, I fully accept that there are some people who will never support any form of ME/CFS research if certain people are involved

I was just trying to steer the discussion towards whether the ME community want to see a research study that would involve -omic research and what will happen to a group of high quality scientists (who have nothing to do with a psychiatric model of causation) if you tell them that people with ME/CFS do not want to make use of their willingness to enter a very controversial area of medicine

 

[daisybell]

I don't think anyone doesn't want these new scientists involved - but we don't want them influenced by the so-called experts who have shown that they twist the science...

 

[Jan]

-

At the moment it's impossible to conclude what view the wider ME community is taking about the MEGA study

There is very vocal opposition on the internet (from a few individuals in particular!) but I know from personal emails that there are people who support the study who are reluctant to join these discussions because they feel they will be shouted down

At the last count we had 7 members of the MEA who had contacted the MEA about the study - both in support and in opposition

The petition in support of MEGA, which has not been mentioned or actively publicised by the MEA apart from on the day of the conference, has attracted almost 2,400 signatures so far

The MEA values what it's members have to say and we listen to them. We are therefore asking them to let us know what they feel about the MEGA proposal (in the current state of discussion) in the November issue of ME Essential magazine

Charles, have you read any of the 100's of comments on here and both petition sites, this is surely not a vocal minority? Please stop attacking us for standing up for ourselves, and for speaking out because we are fearful and distrustful with very good reason! I am a member of the MEA and I find this very upsetting and insulting.

 

[BurnA]

I was just trying to steer the discussion towards whether the ME community want to see a research study that would involve -omic research and what will happen to a group of high quality scientists (who have nothing to do with a psychiatric model of causation) if you tell them that people with ME/CFS do not want to make use of their willingness to enter a very controversial area of medicine

The more you say the more I worry.

Of course we would like an omics study - that should be very clear if your read the posts here on the many threads related to the MEGA study.

To suggest we dont want to make use of the willingness of high quality scientists to enter a controversial field is wide of the mark.

Firstly shouldn't the expectation be that all scientists are high quality ?

Secondly it is only controversial because of the very people we want to Exclude !

 

[Snowdrop]

@Jonathan Edwards

You perhaps make some good points in regards to some other work being done collaboratively in the UK. I'm not aware of everything that goes on.
I certainly have respect for IiME. I do feel frustrated not just with being sick but with the stranglehold that the BPS people who seem to have their fingers in ever so many pies have managed to write the narrative for so long. It just is not clear to me that they are no longer in a position to do that.

I may be wrong in this but I don't believe that the presence of real biomedical researchers changes the landscape. The UK is different (from what I see) in the way it deals with conflict and dissent. More to say on that but not quite sure how ATM.

It would be interesting to understand what's different about the situation where biomedical research has been done that has been valid /good research adding to understanding of this disease.

I'm not commenting my opinion to 'stir the pot' or foment rebellion etc. I appreciate your calm reply.

On another topic not related to JE's post:
And I do have trouble with this 'vocal minority' problem that gets thrown out. I don't even know what to say. People's very continued existence is hanging in the balance on how things move forward. To characterise very sick people this way because they don't agree?

By now it should be abundantly clear: BPS researchers have no place at the ME table. There needs to be a building of trust starting from those engaged in helping the ME community. Early initial communications need to be forthcoming from a liason trusted by PwME. The answers to Q's asked should not sound exactly like a politician evading the tough Q's with a soft answer to something else.

Patients come from all types of experience and education. If there are very good reasons for a 'broad church' approach and the need for 10,000 adults rather than fewer but more inclusive of severe ME I have not heard them yet in a way that makes sense to me. Contrast this with Dr Naviaux (sometimes by way of Janet Davis or Ben Howell) has kept the community updated. So it can be done.

I believe that this MEGA project (if I understand correctly) is early days yet. Since so much has not been settled it seems to me a big misstep to ask the ME community to sign a petition in support of something that is as yet rather nebulous. And in what seems like a PR exercise in knee-jerk reacting to the other petition. Not professional.