PEM discussion thread

I am seeking advice on how to determine if my son is experiencing an extremely long PEM Crash or if his baseline status has now transitioned from being mostly severe to very severe.
There was a very definite and significant crash that occurred in mid April after several weeks of pushing himself a little too much and immediately preceded by a 2 day family trip out of town. He has very typical PEM symptoms including severe headaches, swollen lymph nodes (2-3cm) on one side of his neck (present entire 11 weeks), increased body wide pain, GI issues, weight loss (down by 6kg to 54kg at height of 6 foot 1 inch) and of course he is bedbound & sleeping much of the time. He is getting increasingly weaker.

How long can a PEM crash last when it is at the more severe end of the spectrum?
How do you know when it is no longer a crash but signifies reduced baseline?

 

I'm very sorry to read this Deanne. It's difficult to judge and I think the question has been asked whether baseline reductions, especially at the severe to very severe end, represent a rapidly cycling PEM that is essentially static ("rolling PEM"). So until we know more on mechanisms it may not be as important to discriminate. I don't think we can guess how long a baseline reduction might last - potentially it's relatively short in terms of months rather than years. 11 weeks of significantly worse symptoms and weight loss to 54kg (in a 6' 1"" male) are very worrying.

Here's the MUST calculation using data in your post above. https://www.bapen.org.uk/must-and-self-screening/must-calculator/

 

@Hutan Thank you for your kind words. It is difficult when you cannot make things better nor give your kids certainty about improvement & timeframes.

@SNT Gatchaman I really appreciate your answer. How you explained it makes sense and until there is more understanding of the mechanism I guess we just work with what we do know, which is not much!
Thanks for doing the MUST calculation. Yes his weight is a concern and we have been here before and had an appointment with dietician so I am confident we can prevent further loss & hopefully make gains over a few weeks.

We soldier on, as do others here.

 

Very sorry your son and you are having such a tough time @Deanne NZ. I have nothing useful to add to what Hutan and SNT Gatchaman have said already. At your son's age it's not overly helpful to be told to just eat, sleep and be patient taking one day at a time for who knows how long (not easy at any age but I suspect it's harder on the young, and probably also on mothers watching their youngsters suffer)

 

Moved post

Does anyone else have PEM-like symptoms from food intolerances? For me, it was hard to tell the difference. Both caused lethargy, brainfog, and maybe pain. I no longer get PEM, but certain foods still cause a similar set of symptoms.

 

Before I had eliminated gluten from my diet its effects largely produced the same symptoms as my ME (headache/migraine, brain fog, IBS type symptoms, fatigue, etc), also they kicked in after an almost exact 24 hour delay. So yes they had significant parallels with PEM. Indeed it was only possible to work out what was what once I had stopped work and reduced my activity levels such that individual PEM episodes were clearer and also eliminated gluten from my diet so that any gluten related symptoms triggered by occasional gluten consumption became obvious too.

My food intolerances (caffeine, alcohol, gluten and possibly some aspect of sugar rich foods, such as chocolate, sweets or fizzy drinks) seem to have come on after the onset of my ME, increased in number as my ME deteriorates over the years and overlap in symptoms with my ME and PEM. So in that respect they perhaps could be considered part of the ME rather than a cooccurring condition(s), however my food intolerances also occur independently of my current ME levels, so a gluten reaction is no less when my ME is mild and no more than when it is severe, though I am more likely to break my diet when in PEM and obviously when both a gluten reaction and PEM cooccur their effects are additive.

Gluten intolerance for me has the most noticeable overlap with PEM, but it may be that this relates to consumption patterns as the other food triggers were only ever consumed occasionally whereas gluten was a dietary staple.

(Note - before I had withdrawn gluten from my diet its effects were less clear cut as they were rather an ongoing general, to use a technical term, yuckiness, in practice indistinguishable from my general ongoing ME yuckiness. Also when gluten was part of my daily diet I experienced a ‘cold Turkey’ effect when withdrawing it, severe headaches, nausea, vomiting and IBS type symptoms.)

 

Yes, I do.

Even meals that don't contain anything problematic sometimes trigger PEM. Eating can be the proverbial last straw every bit as much as a shower or having to make a phone call, and I'm not severely ill.