UK: MRC and NIHR announce ME/CFS workshop, November 2019 & ME/CFS Biomedical Partnership FAQ

Yeah I would not trust anything written in my medical file. Not because it's all wrong but because it's a mix of both right and wrong and so generally useless. Yet another important consequence of having knocked this disease so bad we can't rely on much of what medical records say.

Even without a proper biomarker or treatment, a few decades of competent specialist services would have at least accumulated a competent record for a number of patients. Instead all of this information was lost and we're still stuck at the first step of writing down relevant information and making sense of it. If we could at least get that at some point moving forward it will be very useful. Until then medical records can pretty much serve the opposite goal of recording invalid misdiagnoses as being "associated" with, mistakes that are used to support further mistakes in the BPS model.

 

In fact the larger the sample size the worse the problem for systematic bias. The effect of sample size is quite different in that respect to the problem of random fluctuation.

 

As I understand it the healthy controls are already sorted - hundreds of thousands of them. But they are from a UK population so the patients should probably be UK.

Relatives of PWME are no good as controls for a basic GWAS screen for the reason you give. On the other hand they might be useful for other analyses. If mutations turn up in PWME it would be important to know whether those mutations tracked to illness in relatives as well. But until gene associations are found there may be little point in collecting samples from relatives.

 

yes that line amused me too @Sarah94 … if only, right?

This is the first study I've been hopeful about in a while, it might not uncover anything but at least it looks as though it might be run right. I hope it gets funded, what's the estimated cost?

 

This all looks great. Wonderful to see collaboration between researchers and patient involvement. Thanks to @Simon and @Andy for their work on this.

One thing that worries me a bit is whether the questionnaire will be accurate in selecting patients with ME/CFS. I hope there will be a preliminary study to test this before trying to recruit 20.000 patients, to see how accurate the questionnaire is compared to clinically confirmed ME/CFS.

 

Yes to both these points.

Good to see this is happening. But I wonder about the accuracy of patient selection given this statement

"...it wouldn’t be economically feasible to clinically assess every patient independently. However, as part of the study, some patients will have an assessment by a clinician with knowledge of ME/CFS to confirm the diagnosis is accurate"​

Agree with @Michiel Tack about the importance of validating this method first if that has not already been done.

@Andy or @Simon M - are the instruments being used available? Since PEM is core to selection, I'd be interested to see how they evaluate that.

 

Many thanks for all the comments and questions. We are aiming to take note of all the feedback, and will answer all the questions we can, but that will probably take longer than we'd like simply because of all that is currently happening 'behind the scenes' - I appreciate that may well be frustrating but please bear with us for the moment.

 

Crossing fingers and toes and everything else crossable that they'll get the funding.

A couple of practical observations:

I hope they will have more options for onset other than gradual and sudden, as most surveys do. There do seem to be quite a number of people who had a more staggered onset with periods of gradual deterioration as well as sudden major drops in function. And others whose onset was so long ago, but went undiagnosed at the time, that there's no way of being sure any more how it all started.

For the symptoms obviously there would need to be quite a bit of ticking boxes on a list or things become too complicated to analyse. However, it would make sense to have an open answer section, too, to note more unusual symptoms that may or may not relate to ME. With such a large sample it may be possible to pick up some subgroups characterised precisely by some hitherto unrecognised oddball symptom/s.

Don't. Just... don't. Those records would just mess things up.

I would love to participate. But even more I want the study to be as rigorous as possible.

 

Exactly this.

From the FAQ

 

I'm not sure if they used it in this way.

What we would need is a % of patients diagnosed solely with the questionnaire who's diagnosis of ME/CFS was then confirmed after clinical examination. I've could have missed it but I don't think they have published about this.

Don't want to be too negative, but if this % is relatively small the study could select a lot of patients who don't have ME/CFS in the way most ME/CFS studies define it and that might impact the results. Suppose that patients with stress-related fatigue symptoms are included or patients with overlooked auto-immune disorders such as MS or lupus. Maybe these could tip the balance in the final results and suggest a connection that isn't there when looked solely at patients with clinically confirmed ME/CFS.

The GWAS would be by far the largest study in ME/CFS so I suspect its results would dominate the field for years to come. Researchers will probably use it to form their experiments and hypotheses.

So I would like to see an estimate of that % first before anything else.

 

Well said, @Michiel Tack -

 

I can only skim but has an age limit been mentioned? I was on Nacul's ME Registry but was too old for his biobank.

 

There seems to be the assumption that there is only one illness to discover (that is, everyone either has ME or a known illness). We don't know if that is true.

Overly restrictive entry criteria could limit the potential of the study to discover new things that we didn't predict, such as similar illnesses or forms of the illness that don't 100% align with our current view of it.

The use of MRI led to the discovery that MS was a lot more common than thought and that patients with it often ended up misdiagnosed with hysterical paralysis.

Patient selection is important but too much narrowness could be a disadvantage.

 

I think it may matter because the normal genetic spread of different age groups may differ because of differential birth rates and migration. I am pretty sure that if you compared 20,000 80 year olds with 20,000 8 year olds in the UK you would find dramatic genetic differences between the populations.

 

I think patients with "medically unexplained symptoms" have been left to the psychiatrists for too long, and that psychiatry is content to pretend that it has something to offer them even when that is false.

It's unclear but I think there is a real possibility that ME/CFS has been an umbrella diagnosis for at least 25 years.

I worry that the way our search for recognition and scientific progress could play out is that once progress occurs and it becomes too difficult to deny that there is a real disease, the establishment will actually be eager to acknowledge that there is a real disease. Not because it wants to right a wrong but because it wants to narrowly define this new "real disease" for the purpose of limiting the number of patients in this pool. And there are sections of the patient community that I think would be eager collaborators in this new form of illness denial.