UK Planned study: Feasibility of investigating VO2, HR, BP, lactic acid and activity of pwME during normal daily activity, 2020/21, Clague-Baker et al

Great news! Let's hope this reveals something useful. A basic study looking at activity versus symptom fluctuations is something we've needed for a long time.

 

Yes - and especially if there are objective measures explored that could help quantify those symptom reactions to activity.

I find it very hard to explain the smaller symptom indicators, that I KNOW from experience can lead to greater symptom exacerbations.

On their own these small symptoms sound trivial, but as indicators of an impending cascade of increasingly severe problems, I know I must listen. Explaining that to others, without showing any visible or measurable indication of the indicator symptom, can be a real dilemma.

 

Good to hear, I feel like this is exactly the sort of research that should be being done, there has got to be something somewhere objectively measurable going on causing exercise intolerance.

Has it not been done before ? It's a pretty depressing thought if it has really taken this long to get round to testing such obvious and basic things.

 

This may not be relevant, but sometimes I think people look for big problems when small problems are important. Like when they were looking at harms from cigarette smoking. It was all about cancer and death rates, but when everyone smoked, my children would throw up walking home from the bingo fundraiser for the brownies because of nicotine poisoning (took me a while to catch on). I would have to leave weddings because of stinging eyes, not go to see films and so on but the disruption to my life was not seen as important.

In the same way, being able to do a fifty less steps on the day after exercise doesn't sound much but it can be the difference between having a shower and cleaning your teeth and having to do without that.

 

Very small, trivial even, improvements in my 'energy levels' can lead to significant improvements in my QoL - I'm not taking 10-20%, I'm talking 2 or 3%.

It stands to reason that similar very small drops in 'energy levels' can lead to a massive drop in capability, and thus QoL, although these are rarely noticed, as my cognition rarely works that way.

 

@PhysiosforME, where have you been all my illness.

Very interesting proposals.

 

yes especially small 'unusual' things. Things patients report as being 'unusual' and quirky, things/sensations either not experienced before ME or very differently now. Things that Drs dismiss as superficial, hypochondriacal/body watching etc, but which may actually point to something useful.

oh, I am soooo with you there Wonko!

 

There is a non-linearity in it.

 

This is an interesting proposal, but I note with caution that due to significant variations in daily activities, it can be difficult to separate the noise from the signal, unless they use long sampling times, or a large sample size. As such, the feasibility study will simply demonstrate that the data can be collected and that patients won't go on strike when subject to repeated testing!

 

Absolutely - While we are really interested in the potential results, we must first find out whether it is acceptable to people with all levels of severity of ME to complete the testing procedures and if we can recruit to the study. We are very cautious about causing any detrimental effects to those who take part, so this feasibility study is vital to determine whether the tests are going to be safe and effective to apply on a larger scale, as well as check that the outcome measures we use (the scales we use to measure) are suitable.

Will keep you posted

 

Thank you @PhysiosforME. I second other forum people's applause.

Have you thought about including a quick cognitive test? Maybe something like @Graham is working on?

And/ or any idea to protocol cognitive activity as well, maybe only over some days (so that just protocolling cognitive activity doesn't add to cognitive exertion too much)?

I realize that cogntive functioning isn't exactly physiotheapists' field of expertise. Just thought it might be relevant to capture also how pwME pay physically for cogntive activity and vice versa.

 

Have you thought of approaching UK ME/CFS Biobank for advice/thoughts for your feasibility study? They have already got the experience of ‘working’ with some severe patients and will have already made decisions whether a patient, on a certain day, should attempt parts of the standard (Biobank) appointment procedure.

I would have thought Caroline Kingdon would be the best person to ask, as she is the Lead Research Nurse.

good luck!

 

Thanks for this suggestion - it's a great idea and we will definitely reach out to them

 

@Njc36 here you go

 

Hi all this is Nicola CB
Thank you for your really valuable question. When we were putting together this proposal we asked stroke OTs and Psychologists for a quick cognitive test we could use throughout the week of testing. We had a number of responses including from Charlie Chung which werebuseful but we have struggled to find a short one. If you know of one please let us know. I'll have a look at your suggestion. We recognise the importance of measuring cognition, pain, fatigue etc as well as physical measures so we can attempt to correlate symptoms with physiological responses. We are using a rating scale for PEM and devising a new scale using quantitative semantics. Thank you for your comments and keep them coming.

 

In relation to cognitive activity yes we will be attempting to record this with diaries but we are mindful that we are asking our participants to do a lot so we don't want to add too much to their week of testing. Thanks Nikki

 

A cognitive test would be incredibly valuable. The right kind of test would actually be a good exertion trigger and could be useful for patients who cannot undergo physical tests.

Is there a repository somewhere of such tests? Maybe we could help evaluate them? This is such a difficult topic to get right because brain fog mostly has to do with higher brain function while cognitive tests tend to go for extreme problems like being unable to tell a giraffe apart from a clock.

Frankly something like an IQ test would probably be best, though a bit simpler. Things like puzzles that require wit. It must require paying attention, using short-term memory and correlating things. This is where it gets hardest and performance will degrade rapidly. It's about testing cognitive performance and the ability to sustain it, not extreme damage that physically disables faculties.

And it must avoid predictability, one way to work around brain fog is precisely to coast on autopilot. This is why tests like response time and such are inadequate, you can usually get into an automatic response state without thinking. It's actively thinking that is hard, things that are more demanding in terms of brain power, which can be sustained by a healthy person for some hours but not indefinitely.

 

I have done cognitive testing and it was within the norm but I'm 100% sure my performance has suffered. That means I think that the test I did is not suitable for identifying the problems I have.

I suspect the problem could be reduced blood flow to the brain. Are there cognitive tests suitable to detect the effects of this on mental performance?

If not, may I suggest just inventing a test. It should be pretty easy as long as it involves standing upright and some cognitive task like holding a conversion or reading out loud from a book to an audience, in a sort of performance and endurance test.

 

Thinking of objective measures:

When I’m starting to struggle I notice my coordination becomes clunky, and my reaction times increase. Perhaps these features might be measureable?

Eg Coordination affects my ability to negotiate obstacles when walking - at home we have a step down followed by an immediate right turn into the bathroom. I use this as a sort of personal wellness marker - when I can’t do it in one movement, I know I’m starting to struggle! Manual dexterity is also affected, and perhaps that would be more easily measurable?

Also, I think there was a study somewhere on eye movements, and tracking a moving object, and how that ability dropped during PEM.

I have also noticed that my ability to focus from near to far & far to near gets slower when I’ve over done things. I’m not sure if there is a test that could be devised to measure this?

Perhaps something to think about.