S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire

Agreed - we're told it's fatigue, so I think we have a tendency to frame our symptoms in that context. I was fairly ambivalent about the use of "fatigue" to describe my symptoms, until I got diabetes. It took at least several weeks before we checked my blood sugar and realized what was wrong, and in the mean time I was pretty hyperglycemic, then got even more hyperglycemic after diagnosis due to inappropriate treatment.

In the early stages of diabetic ketoacidosis, I felt extreme fatigue and it was nothing like my ME symptoms, aside from also feeling wiped out and wanting to lie down a lot. I was okay with fatigue being an approximation for ME symptoms, until I really did experience weeks of something that was undeniably fatigue.

So having felt what I would qualify as definitely-fatigue, I'm now pretty certain that my maybe-fatigue with ME is not fatigue at all. It's fatigueability, weakness, light-headedness, slow recovery, PEM, and probably a few other things. But none of them feel the same as my fatigue did.

 

I'm not sure but we might be entering the world of the Unknown with some of the assumptions. You can equally go into PEM if you have a cold and are sitting on the couch resting, so pacing isn't the only factor? PEM severity and frequency are not just about exercise they are cognitive too and arise from the sum of all activity but also can seem to be quite random in terms of progression (from my own experience and that of others I've read on the forums) so it's not just about muscles. Severity does not necessarily correlate to how much you've pushed ...I think that's a big assumption...it could equally be attributable to other things.

Putting that aside though, inthe broadest sense any treatment should be robust enough to prove that it is effective against all of these factors not just the ones we academically pluck out of the air such as CPET etc.

So as well as having slices of objective measures that may or may not give you a full picture, you also need a measure of the whole success of a treatment. Certainly this is true for new studies where no clarity exists of confirmed links with measures and reality.

THis was my context in my previous post suggesting the measurement of PEM severity and frequency...it tells you whether a treatment has worked or not in the broadest sense.

Epilepsy for instance is a good example in terms of an illness described by periods of relative stability and episodic symptoms. The life of sufferers gets progressively worse the higher the frequency of seizures where in some severe cases seizure frequency is so high that this is very limiting. It is also thought that the more seizures the patient has, the higher the chance of these recurring. This may be the case for PEM, I'm not sure we know that though. However I think the parallel is a reasonable one.

It is customary to subjectively measure the frequency and severity (and type) of seizure as a measure of this condition and to tell how well the patient is responding to treatment. You also have the EEG machine to see what's going on before, after and during a seizure. However there is not a practical way of measuring progress objectively in real life on a constant basis. In fact the EEG machine stays where it is most of the time and the respondent has to visit the hospital and have a seizure induced so they can measure what's going on. So this becomes an intrusive test that you don't want to do too frequently (like the CPET). That leaves the subjective measurements as the more important measure of what progress is being made due to practical reasons.

I'm pretty sure if I had significantly less PEM episodes than I did before I had treatment, I would class that treatment as a success? Objective measurements tend to show you only one thing not the whole. You have to prove that the objective measure is giving you a true reflection of treatment success/disease progression. I'm not sure any of the examples listed so far have a direct corellation or are particularly practical. This means we need to look at the. It picture first and then drill down.

Chalder picked the wrong subjective measure and used rubbish methodology, that doesn't mean the premise of trying to measure the big picture was wrong.

 

This bit I'm not sure about - at least not for everyone at every stage. While I was moderately affected I had good phases and bad phases - perhaps best described as relapsing/remitting.

Depending on the timing, I thing it would be easy to say X treatment helped, when I might have been due a good phase anyway.

 

I would say yes. Your body is facing an additional burden, fighting off the infection. It has extra work to do, and feels the consequences, whether it's voluntary work or not.

Perhaps, for those at the very extreme end of severity are in the situation where the basic and minimum body function needed to stay alive is triggering PEM.

 

The complexity of this makes my head hurt.

It used to be known that there was, in some people, an objective feature associated with some episodes of what is now called PEM. It was observed by third parties that the patient would go pallid shortly before onset. Third parties could predict onset of the relapse before the patient was aware of it. I have not seen this mentioned for some time.

 

Yes I don't know the answer either, other than from observation. I have raised heart rate without doing exercise or exertion of any sort. Being too hot in the summer was a prime example, attending an interview, getting a virus, having hayfever or an allergic reaction to something, trying to spend more time than is sensible on cognitive tasks. I think PEM may actually be only part of the story in terms of measures but it still may be indicative of other things as one measure?

Sorry I meant to multiquote the other points but iPad is throwing a funny loop.

Regarding the absence of PEM ...yes you are quite right ...I should have said whilst resuming a normal active life. So yes pacing measures need to run alongside, I guess such as an objective activity measure. I don't think pacing and living your life in your bed or on the sofa trapped in the house and never seeing anybody is a normal life so no that definitely isn't a success.

It raises an interesting point in terms of threshold and what normal activity looks like though.

So absence of PEM for 6 months without pacing activity would be a measure of success

Regarding your point @Invisible Woman

Yes I think this point goes across the board for any proposed treatment...we need statistical work to show what chance of remission is likely without treatment

 

This has made me think of the roosting display of starlings in various parts of the country. (www.youtube.com/watch?v=V4f_1_r80RY)

If you were to focus on one or two starlings in particular, you would just get a busy, chaotic flightpath. But zoom out at the vast flock and the picture is extremely different.

Perhaps focusing on fatigue or PEM is too specific. Perhaps we need to step back: we need to develop measures that look at the quality of life a patient has: any worthwhile treatment should improve that. It wouldn't be easy, but it looks as if fatigue and PEM are no walk in the park either. Needless to say, those measures should be as objective as possible.

 

Should also say My head is also hurting so the chances of gibberish occurring may overtake my bad grammar and spelling

 

YES! If perception of fatigue reduces, then that is simply a secondary bonus, nothing more. I mean, if people's real physical capability improved, then very likely so would their perception of fatigue improve. But that causal relationship does not apply the other way round.

 

Absolutely, along with actual physical function ... not 'measured' via a questionnaire!

 

I presume by this you mean PwME having PEM with a cold, not the general population?

 

I think what it means is that there needs to be a core set of measures, with an overall combined improvment in them seen, to count as real improvement; as you say decline in one area can lead to improvement in another. It is the whole suite of core issues that needs to improve, as a combined set.

For example:

• Physical function
• Cognitive function
• PEM
• Rate of post-exercise recovery
• Rate of post-exercise decline
• Etc, other stuff I'm sure I've overlooked.

Note I've not included fatigue in the above, because I think it is worth considering, I do not believe is part of the core set.

Also, looking at my list above, it occurs to me they probably can all be measure objectively to some degree, given the right tests, though I wasn't thinking in those terms when I jotted them down. But I suspect it may not be coincidental.

 

Yes ....

I think heart rate activity and PEM do have a link, but I don't think anyone has proved this definitively...I have also observed an accumulation effect (which is probably because I'm on the mild moderate severity scale) where if you have two or three moderate activity days one after the other this can trigger PEM in the same way as one silly overly active day (overly active for me would be walking 2 miles straight or something similar).

So if you measured heart rate activity as an objective measure of activity this would still be subject to caveats that it had no PEM associated with the change.... which brings you back to frequency. I've tried measuring PEM on my symptom tracker but ultimately it's easier to say "do I have PEM yes/ no since deducing it from all the symptoms coinciding (the cognitive declines, joint and muscle pain, GI symptoms) and activity etc is a bit tricky.

 

I regularly have crashs (PEM?) after colds.

 

I can relate to this.

I'd say what I'm currently experiencing post shingles is a lowering of my tolerance for activity (greater fatigability), hence more frequent PEM which is triggered at a lower energy expenditure than before, alongside general feeling more bleurgh.
That doesn't help, does it

 

I dunno if it's helpful to throw this into the mix but:

Up to 10 yeare from onset approx. I would have answered a questionnaire differently.

So if I filled in even a very good, non biased questionnaire then and now it would look like two different patients. Is it possible that, for at least a subgroup, there may be phases or progression. Do we need to identify/capture that?

Like Mady Hornig's (?) results seemed meaningless until they sorted by length of illness.

 

I was chewing this over while meandering over a boggy field with our dog this afternoon. I think I would settle for a two-stage assessment. One would be a before and after activity monitor, carried out over a sensible period of time. I know they have their problems, but we are talking about meaningful improvements in the quality of life, not just minor fluctuations. The other would be some sort of simple cognitive test: something like the one where you are asked to repeat a sequence of numbers and letters, and the sequence slowly gets longer. I've tried these before, and they don't need to be very long to show our difficulties: we fade out very quickly.

Of course, for the severely affected, an activity monitor is a bit of an insult, but if we are talking about an effective treatment for ME, then we would expect to find that patient able to participate in a more active lifestyle. I can take our dog out for a slow walk for around 45 minutes, but then that's it for walking for that day. It would be easy enough to discover that I could do much more.

I realize that most of us would be grateful for even minor improvements, but in all honesty, that sort of improvement is so easily confused with statistical noise, it is troublesome.

One problem that we face with the 6-minute walk etc. is that there are few references to what able-bodied people can do, but as long as we are focused on substantial improvements, I think we could accept that.

 

This may not be the place for this, but an occupational psychologist I did a work placement with (had a particular interest in ME, Fibro and MCS amongst other things, though main focus was workplace stress) suggested I look at the work of Borg (no, not that Borg ) on perceived exertion.

I haven't looked at this since around 2000, and there does some to be some work that uses it.

Including a study by Prof R H T Edwards of Liverpool uni who misdiagnosed a friend of mine with ME when later she was found to have MS. Thus costing her years of being refused DLA. As soon as she had the MS diagnosis she got DLA with no problems. Which leads me to believe this study is probably carp. (if people wonder, it's from moneysavingexpert.com forum where it's used to avoid the bad language filter)

Unfortunately Borg's test seems to have been used (with other tests) by some of the GE lunatics to prove GE works.

Might try do some reading on Borg's test and CFS when we go home - currently at new caravan in Bwlchtocyn where we've been without landlord's internet for the whole field until yesterday late afternoon. My personal internet has gone down completely along with our phone line, so expecting an engineer Monday afternoon. Sorry - off topic! Too much needs doing here for me to read and take in things well... Very crashed today after journey down followed by overdoing things trying to help (in very small ways) OH get new van in live-able state.