Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

Personally, I'd add something to reflect that symptoms not normally felt when pacing is sufficient can be brought on by over exertion I.e. recently, following over exertion, I was affected by IBS, something that is not normally an issue for me.

 

As someone who doesn't experience too many symptoms with M.E (except the obvious loss of stamina and OI), some episodes of PEM has scared me to the point where I wanted to call 911.

 

My mistake, @Graham, I misunderstood what you meant with your analogy then (got a flu-ey bug, so brain is even worse than usual ).

I got the impression that at this point they are in fact just looking for a way to determine whether PEM is present or not, in order to rule people in or out for having ME. The problem is that the only so-far validated questionnaire is not very good, and that's what we need to challenge, and hopefully get them to plan to replace.

I think we probably agree that key points are yes/no on whether a patient gets PEM, and that any measure must allow for the possibility of pacing meaning that the patient has not experienced PEM much or at all in the measured time frame.

 

It'd be nice for that to happen but I agree, someone, somewhere, has probably managed it, the best I can do is cut the duration and severity, or maybe it's not me, it's just coincidence that this seems to have happened, and nothing to do with my input

 

I actually like the descriptors the sub group is already opting to use, which are slightly expanded versions of your points @Trish,

The question is, how to get all the points raised in this thread into a form suitable to suggest as a better questionnaire to go with the description.

 

Thanks to everyone who has contributed and I'm sorry there was so much info to wade through.

So far there has been a strong positive response that the proposed PEM questionnaire is not suitable, with no dissenters - and forums are not noted for people holding back. So it seems this is an issue for a good many people.

A lot of different views were expressed too and I'm trying to identify what everyone can agree on. How about:

1. The proposed questionnaire does a poor job of capturing PEM
2. A replacement should emphasise the experience of symptom flare with delayed onset after physical or mental exertion
3. The scoring around severity and frequency is inappropriate and likely to miss PEM - we need a way to measure the propensity to PEM and how most patients pace to avoid it. (As in Graham's analogy of how readily unexposed skin burns in the sun, not how often it burn is you always cover yourself with factor 50 sun cream).

Beyond that, we could summarise a range of suggestions on how to improve the questionnaire.

Thoughts? Feel free to improve this.

If we can agree on a common position we could think of a united submission.

I am thinking of starting a similar thread of PR to get the views of more patients.

 

Yeah, I am so severe I am in permanent PEM, it only varies in degree...random or otherwise remissions for any reason would be welcome

 

• Dead, heavy feeling after starting to exercise. Sometimes, If I am having good day, is ok (at a 7 or 8)

• Next day soreness or fatigue after non-strenuous, everyday activities. Yes no matter the scale.

• Mentally tired after the slightest effort. Not anymore (it takes more to get brain fog, more to do with being upright than anything else)
  

• 
  
• Minimum exercise makes you physically tired. Sometimes, If I am having day lower than a 5.

• Physically drained or sick after mild activity. Depends on my day.

• ___________________________________

• A flare of some or all of an individual’s symptoms, Yes

• with an immediate or delayed onset and Yes

• with prolonged recovery. Sometimes, depending how far I overdo (unconsciously).

• Severity and duration of symptoms are out of proportion to the initial trigger. Yes
  

• 
  
• There is a loss of functional capacity and/or stamina. Yes

Per you can see the second reflects more for me. The first set is all depends answers.

 

Something that could help, is to see the symptoms of plp of exercise intolerance (mito and POTs group) vs the PEM group (CFS).
Since I have both POTs and CFS I can tell you it comes down to the exacerbation of existing symptoms. I would propose to change to the second one as follow:

• A flare of some or all of an individual’s symptoms
• A flare of some or all of an individual’s symptoms
• with an immediate or delayed onset
• with prolonged recovery. I would substitute the prolonged with, 1) recovery takes longer than it should for the activity / task performed. or 2) out of proportion recovery time.
• Severity and duration of symptoms are out of proportion to the initial trigger. Yes
  
• There is a loss of functional capacity and/or stamina. Yes

 

I agree with all of these.

Going back to the IOM definition, there are some more things you could add in there:

• A flare of some or all of an individual’s symptoms,
• with an immediate or delayed onset and
• with prolonged recovery.
• Severity and duration of symptoms are out of proportion to the initial trigger.
• There is a loss of functional capacity and/or stamina.

Could we propose something as simple as, 'If you considerably over-exert yourself, do you experience any of the following?", followed by that IOM list?

Good idea - we do need to be 'nothing about me without me' and to not restrict this to members of a single forum or platform.

 

Note: The questions have to apply in good days and bad days. Some days I do not have to considerably over do, some little will do. The term over-exert covers going over your limit (weather is significantly or not). My reaction of the PEM is different depending as of how much I over-exert myself after my limit. Pem will quick in independently of how much. Symptom severity does depend on how much I pass that line.

 

But isn't Simon suggesting that a PEM measure shouldn't be measuring severity or frequency? That what matters is whether someone gets PEM, not how badly, and regardless of the exertion threshold that caused it?

 

Could 'sick' be clarified or changed? Does it mean nauseous or simply ill?

 

In the US I think 'ill' means nauseous, confusingly...

 

I am not medically trained, but......IMO sick means sick, as in nauseous, ill means ill, as in flu - it is common IME to be both, at the same time while PEM'd

 

I think the point was being made around your suggested use of "considerably" within "If you considerably over-exert yourself, do you experience any of the following?". So someone who is severe enough may look at that and think that to qualify as considerably over-exerting themselves they would need to get out of bed, for example, rather than, as another example, just lift their arm up, which may be enough to cause them PEM.

Would it not be clearer to approach this along the lines of an ME patient, if they exceed their personal exertional limit, will cause themselves PEM. And we therefore don't need to qualify the amount of over-exertion. So making the proposed question to be "When you over-exert yourself, do you experience any of the following?"? As, if they don't suffer PEM, then they haven't over-exerted themselves?

ETA: Changed some wording in 2nd para.

 

Oh, I see - yes, I agree.

 

Actually I think some clarification on it being a patients own personal exertion limit is vital in the question itself. My guess is that many people will look to other people first for examples of what over-exertion might be, I know that is what my tendency is to do, rather than look to their own limits.

So that makes my suggestion to be, "When you exceed your own exertion limit, do you experience any of the following?"

 

I think that might be a bit circular - it sort of pre-supposes PEM, or at least a reason to have an exertion limit (beyond being flesh and blood).

How about the neutral, "Does exertion ever cause you to experience any of the following?"

Do we need to distinguish types of exertion (physical, cognitive etc)?

 

Well, we all have an exertion limit, healthy or not. But, yes, in people with ME I am pre-supposing that they will experience PEM.

Personally I think that is then too neutral. And how much exertion would seem to be a natural question in response to it.

How about I reverse it? "Do you experience any of the following after you have exceeded your own exertion limit?"?