Hand grip strength as a clinical biomarker for ME/CFS, 2018, Nacul et al

Yes but the problem is anything can and will be twisted until they are blacklisted by the rest of the medical profession.

I'll give an example Tesla has a cabal of short sellers who do everything possible to talk down the company, short selling is when you bet large amounts of money a stock will go down and if it does you make money. If it goes up you lose money. Some of their experts appear on the news to spin every piece of good news as a harbinger of failure. Increased volume means they are maxed out (they have claimed this virtually every quarter that production has risen), demand is temporary every time it rises, profit is impossible and when it happens its always unsustainable, claimed costs are lies, the cars are poorly built because they use too much metal (having crash safety better then the competition is not acceptable justification), there are no resources to make batteries, the market is saturated every time sales increase and so on. All good news is turned into bad news because they need Tesla to fail to make money.

If we end up with a disease mechanism they will just claim its psychosomatically induced and treatable with CBT. The problem with reality denial is that there is no shame and no accountability, its almost like politics.

 

Yes, agreed, but doesn't that presuppose a credibly successful intervention?

Yes, ok. But couldn't that lack of change be attributable to the patient if it is exercise-based - which is what I presume is where it would dead-end currently?

I would feel better if they had qualified "intervention" with "future". Point taken, though, @Sasha and @Philipp .

 

It will need more research, but the obvious next step would be the difference in HGS during PEM. It also shows a group of researchers trying to find a way of getting an objective test that all groups of patients can participate in.

 

No, just a clinical trial. If we have a solid outcome measure, then we'll be able to tell whether an intervention is any good or not. So if an intervention is rubbish - such as CBT/GET - we'll see it; and if there's something truly good, we'll see it. And we need these measures ready now. People are already trialling interesting things, such as cyclophosphamide (the Norwegians).

 

Because we do not yet have a useful intervention, I am concerned that until we do, potential good tools such as this can be used against us as blunt instruments to discredit our valid experiences. History is not on our side. Before MS was fully accepted, would such a test have helped MS sufferers? Do you think it would help patients with Periodic Paralysis today without a genetic marker?

Abstracts can be misleading, certainly, but for the average clinician who bothers to review any sort of research - and I suspect most do so only exceptionally - the intervention reference could be misinterpreted.

However, I do appreciate that it can help going forward, and I apologize if I am coming off too cynical.

 

I think there are two separate issues here. One is, is this test any good as an objective test of grip strength, and therefore of decline in grip strength after the test is repeated? On the face of it (and I stress that I haven't read the paper, which isn't yet available), I don't know that it is, because I don't know what prevents it being a measure of effort-by-choice rather than maximal effort. If there's nothing in the test to prevent that, then I'm not sure how helpful the test is.

A separate issue is, if this is a good test, is it needed for clinical trials right now? And I do think we need good outcome measures, right now.

 

Grip strength was "tested" in the physical assessment for PIP. My friend has had ME for over 25 years and has noticeably reduced strength.
The physio just asked her to squeeze her hand, to measure this. Her report said "grip strength normal". One of my many comments for the mandatory reconsideration was that her grip strength was certainly NOT normal for a healthy 45 year old woman. It was interesting to see that this had been changed in the revised Decision letter from "normal" to "adequate".

I think that the numerous errors/misleading statements etc made by the, so-called, professional in her report helped my friend's case at Tribunal.

 

Looks like the devices are pretty cheap too. If validated, this would be much safer than a CPET.

So a quick google reveals this: https://www.sciencedirect.com/science/article/pii/S2093791117300914

So it suggests testing in three different positions will detect feigned effort.

Then this one suggests depression might confound results (perhaps due to feigned effort) in a five-position grip test:
https://www.jospt.org/doi/full/10.2519/jospt.2011.3328

This study implies that instruction (or practice) can offset the usual cues for feigned hand grip strength: https://journals.lww.com/ajpmr/Abst...y_Control_of_Submaximal_Grip_Strength.10.aspx

And this very recent study suggests the test doesn't discern between injury and feigning: https://journals.sagepub.com/doi/abs/10.1177/1753193417728409?journalCode=jhsc

Back to the drawing board?

 

No, in many diseases doctors can't see symptoms and go by what the patient tells them. If we assume everyone lies about everything then medicine would grind to a halt quickly, pain is hard to measure yet doctors prescribe painkillers (maybe too easily), symptoms from many diseases don't present in doctor's offices on schedule, they still need treatment, some symptoms are intermittent and descriptions are subjective. Depressed patients are diagnosed by DSM questionnaires. In diseases that are not ME its not assumed all patients are lying.

Frankly we need to get the PACErs in front of an ethics board and have their licenses revoked for medical fraud

 

The trouble with this test as a biomarker for ME is that if it is possible for a healthy person to mimick the ME patient's result (by not gripping as hard as they could on the first test then reducing grip on the next two) then it will not be accepted by the authorities for disability purposes.
We need a biomarker that cannot be faked.

 

This is certainly not a biomarker, low grip strength is probably associated with dozens if not hundreds of conditions. At best its an adjunct test.

 

My experience of the BPS group is that it not what the abnormality is, it is what the answer is.

... and the answer is always going to be something like a graduated program of arm exercises which will take £5 million pounds to trial and take 5 years.

I'm quite serious. I learned this from the Gibson Inquiry when one of the PACE team was asked about Dr Kerr's (then) gene mutation research. The answer was that GE would be able to reverse this.

So, any abnormality we ever find will still be curable through GET or CBT in the minds of the PACE supporters.

 

We certainly do need one that cannot be faked.

For all we know, and it may be in the literature, there may be methods in place around that test that cut down the likelihood of faking. As an example when I did a memory test there was written in the test a procedure that was supposed to be used against faking.

 

It's not about lying or not lying. It's about how reliable and accurate this test is, and for places like the NHS, it's also about how cost-effective it is.

If the test isn't very reliable or accurate, then it's easier to just ask the patient if they have PEM and go with that. Why bother with a three-day test when it's no more useful than a questionnaire?

ETA: These are questions and hypotheticals. I'm not necessarily saying the tests are inaccurate.

 

https://twitter.com/user/status/1061906598661107712

 

I also have concerns about any possible ability to fake this test, for pwme to be accused of faking or not trying hard enough.
Also as to whether it could be interpreted as deconditioning.

 

Of course. I'm not saying it is unreliable (yet). But we need to ask these questions (obviously we can't answer until the results and methods are published).

I read it as three tests on separate days, simply because I was anticipating that it would capture PEM. Three tests on one day would be helpful for cost purposes, but I'm not sure what it's capturing in that case. How quickly does PEM kick in for most of us?

I think it would be useful to know how the study attempts to avoid feigned weakness or lack of volition, because I suspect those will be the first two objections raised to the results. I'm not saying those objections are true, but we should consider them.

 

A lot of clinicians will ask the patient to squeeze their hand and I have always wondered about the reliability of that.

There’s also a device that can be used, apparently it’s called a hand Dynamometer. Looks like this:

https://www.ebay.com/itm/Baseline-Hydraulic-Hand-Dynamometer-Made-in-USA-/362479738840

I have always thought they should take several serial measurements, to see the strength deteriorate.

Apparently there’s some way they can do that with other muscles, too, from my understanding.
https://occupyme.net/pem-series-article/

 

Hand grip strength and other muscle testing (yes, even “lift against my hand”... seems ok must be normal—even from a doctor who doesn’t normally do such evaluations) is used as part of a way to evaluate for medical necessity for a powered wheelchair.

So I a little bit doubt anyone would get much traction trying to invalidate the test. There would be pushback. Too many people would get hurt, both other disabled groups (who can get to government centers to lobby, or who have family who will) and industry groups (wheelchair makers, for instance). Also doctors are starting to realize they have to get political.

So I wouldn’t worry too much about the test being trashed by, I want to say bogeymen but that implies they have no power. They still do. Anyway you know what I mean.

I hope I am not wrong. Shouldn’t underestimate the opposition.

But don’t want to let them spoil a thing when it would be useful, either.