An update to our earlier comments about MEGA (M.E./CFS Epidemiology and Genomics Alliance) , following requests by supporters to comment on the recent OMEGA (Opposing MEGA) petition which opposes this project.

Our statement from September(below) detailed our concerns about the MEGA project.

Since that statement we have seen nothing which changes our earlier view.

The OMEGA petition [1] is a well worded document.

We agree with the OMEGA petition that the liberal use of the terms "biological" and "biomedical" is likely a purposeful act to encourage support from people who otherwise remain highly sceptical of those involved in setting up the original petition.

It was actually notable at the recent collaborative meeting in Newcastle how a known advocate of the behaviouralist view of ME seemed to liberally sprinkle their comments with the word "biomedical" - much like a converted atheist, though we doubt such miracles have actually occurred in this context. We do, however, feel that this change in terminology is a tactic.

In agreement with the OMEGA petition again regarding severely affected - Invest in ME has always been of the view that severely affected should not be excluded from consideration in any research into ME.

In our original statement in September we stated our lack of confidence in having anyone involved in any project researching ME, who also had connections to the PACE, SMILE or MAGENTA.

"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."

Therefore, having already requested that the MRC refuse to fund any more research into ME by those involved in PACE then we cannot accept that these people are involved in any aspect of future research at least until an inquiry has been held into the flawed PACE trial.

These points alone do not allow us to consider endorsing the MEGA project as it is.

If one then looks at the patient representation and the organisations involved - including one organisation who was influential in setting up the PACE trial and another who resolutely refuses to denounce the PACE trial - then it is clear to see that Invest in ME would have no confidence in these organisations being part of any major research commanding large amounts of public funding either.

The OMEGA petition against the MEGA project states that -

"There are genuine opportunities for UK biomedical researchers to get involved in ME/CFS research and to really make a difference to millions of people's lives. It is not a case of 'MEGA or nothing' "

We agree.

We believe we have a better way of achieving real advances in research into ME [2] using far less funding than the estimate of the MEGA project (which is still not fully determined). We have already stated our vision of how research should be carried out [3] and we intend to continue that policy. Ours is easily attainable, given enough support, and we believe this will have a far more immediate and beneficial outcome for people with ME and their families than the MEGA project.

Though it is not our concern what the MEGA project and the organisations behind it are doing we have been asked to comment and we can easily state that we agree with the sentiments behind the OMEGA counter-petition.

Patients and their families who are suspicious of the motives of those organising the petition to support MEGA and the MEGA project itself have every reason to be cautious.

We have huge doubts that the MEGA project will lead to anything conclusive that will benefit patients in the immediate future.

We have no confidence in some of those proposing this study.

We do not believe it is the best way to use scarce public or private funding for research into ME at this time.

We do not support the MEGA project in the way it is presented because the effects of removing funding for other projects caused by a successful MEGA application will, we believe, ultimately fail people with ME and their families.

It is understandable that some are eager to support what is put forward as a change for all and hope it will lead somewhere, that suddenly ME is taken seriously, that progress will be made.

From our review of the IOM report we stated -

"What a waste of life has been allowed to occur by governments from their failure to monitor progress or listen to continuing and mounting patient concerns; how corrupt and immoral has been the attitude of those leading the organisations which use public funding of ME research, given mainly to researchers who consider ME/CFS a psychosomatic illness?"

So when we look at how this has been set up, by whom and the vagueness of the whole approach - and especially at some of those involved in this proposal - we are left to wonder how many second chances do these people and organisations deserve?

Progress is a fine word - but change is its motivator.

We really do not see change in some of the people and organisations presenting this project.

We support the sentiments expressed in the OMEGA petition.

We do not support the MEGA project for the previously stated reasons.

References

1 Omega Petition - Opposing Mega https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

2 Building the Future for Research into ME

3 Centre of Excellence for ME

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 â 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.

Related Information

Invest in ME Letter to MRC February 2016

Invest in ME Letter to Lancet February 2016

Further Invest in ME Letter to the Medical Research Council