Stanford ME/CFS Initiative: PEM Avoidance Toolkit

Futhermore, if you don’t follow the published PEM guidelines, then you the sick patient are at fault for still being sick.

Cuz, didn’t you know, following the PEM guidelines is.....

A-B-C, It’s Easy as 1-2-3!!

https://www.youtube.com/watch?v=_8m7yhtPsqc

 

I was,thinking how different things are for us yesterday. I had a job interview.

Prepared as much as I could well in advance making written notes to myself etc. Got suited and booted (took 3 hrs with rest) was odd after wearing sweatshirt and jeans for a whole year. drove to the place, found it despite road works and strange directions. Looked at myself in the mirror ..still looking ok but red in the face but no visible signs of oddness. Walking ok to reception.

Enter reception ...first hurdle unmanned automatic check in with loads of questions about nausea diahorrea and general sickness (food factory ) so obviously first cognitive challenge ...obviously lied about nausea etc. Then met and told room double booked by retailer that just arrived, so back in the car to a different site down the road to do the whole check in again with interviewer watching. Interview then lasted 2 hrs instead of 30 min ..I start rambling towards the end so try and wrap up and do listening face with minimal input trick. Try and get in the car realise that joint pain flare so get into the car like ancient arthritic stick insect eventually get in look at face ...beetroot red and look up...interviewer looking at me with bemused look on her face through reception window ...epic fail so near yet so far

Today I've got my Other face on ...not expecting the phone to ring.

Think we should have before and after photos On that poster.

 

In between the “before” and “after” images, I’d maybe consider a few “during” ones too; well, at least for the comical impact. We don’t want our viewers to get bored.

Hmmm...and the Winner of the “Best Sloth” category .. goes to... @arewenearlythereyet !!!

 

Definitely flakey

 

The irony is I tried ....I really did!

I really thought doing all this type of activity plotting and planning to the very nth degree would make a massive difference.....

 

this is REALLY depressing.

i realize that from the perspective of where we were a few years ago, we are making more progress than ever. i realize that movements enter a period where everything seems fruitless, and often that period is where a massive effort can produce victory.

but i look at progress from where we /need/ to be. and although this is a tiny thing in the grand perspective, it is REALLY depressing.

if our best doctors and researchers are excited about this, then we are screwed.

who funded it?

where did the panel come from?

why montoya?

===

where the fuck is the biology?

eta 1: i basically never curse.

eta 2: just in case anybody is confused, this is regress.

 

Maybe there's also a danger of being overly critical because standards are higher? I've not read the document, so perhaps shouldn't be commenting, but generally I think it's worth trying to keep fairly consistent standards for different groups, or else we risk being more condemning of flawed but useful work from those we expect more from, than we are of much more seriously flawed work from people with an already bad reputation.

Having said that, I'm doubtful that there's any real value in a project like this, and there do seem to be some annoying bits that people have pulled out. Patients seem to have so many different issues and ways of responding that any 'guide' is going to be actively unhelpful for many of those who read it.

 

Looking forward to your comments after the read

 

Who needs Biology? Maybe you missed my A-B-C video? To avoid PEM, you just gotta go with the flow, and move your feet to the beat.



(If offended, please excuse my snark)

 

I think this is an excellent document for new patients in the mild category who haven't made themselves much worse yet by not knowing how to pace.

The document refers to tracking HR twice, and also recommends support groups, educational literature and going on the internet, where those interested can find out more about HR monitoring.

Learning about pacing and doing it right takes months, if not a couple of years, and you can do a whole course on it:

http://www.cfidsselfhelp.org/library/topic/Basics:+CFS+%26+FM+101

Or get and read the book:

http://www.cfidsselfhelp.org/library/managing-chronic-fatigue-syndrome-and-fibromyalgia

I did this with the record keeping and everything and found it very helpful. I also did the online course with others, many (including myself) were at a level similar to the examples in Montoya's document, which I find realistic and helpful.

I agree the document offers no help for severe sufferers, I don't think it claims to. 75% of sufferers are not severe, and I think the document is very useful for them. My onset was sudden, but mild, which I made progressively worse by doing what's intuitive - resting until I felt better and then testing my limits again. If I had been given this document on my first visit to a doctor it would have made me think about things much sooner instead of finding out the hard way by trial and error over a period of 9 months, making myself worse before I even thought of trying to pace. New mild patients need this information quickly and in a handy format - this document is a great place to start, only a few pages long and covers a lot of topics in a short space. If it was any longer people wouldn't read it or would be overwhelmed. They can get into the details of what interests them or what they feel applies to them later.

If you are one of the sufferers who is fortunate enough to be able to reduce PEM by pacing then you should be given this document or something like it as soon as possible. Of course not everyone is as active as the examples or able to manage their ME in this way, but for those who are, and there are many of them, especially those with gradual onset in the early stages, it's just what they need.

 

Some of the criticisms here seem to deal with "well why aren't they dealing with biomedical issues". Well, because it's a PEM avoidance toolkit, and one that is presumably handed out to the newly diagnosed. Even for those of us further down the scale (I myself am severely affected) this is useful because it helps to keep a reminder of what we should be doing, even if it's a far lower level of activity than what is presented in the guide.

 

I wonder whether if you have gradual onset it's is even possible to get any advice early without a biomarker. For me it took a year and a half from first getting noticeable symptoms to receiving a diagnosis. I do wonder what damage that delay caused especially as I didn't have brain fog until much later on when symptoms reached crisis point (started with numb hands and joint pain). This is the problem with diagnosis by elimination I guess?

Im trying to remember that diagnosis phase...I'm pretty sure if my current elimination was for MS or Cancer , RA, Addisons I wouldn't have been too receptive to any advice about ME\CFS...I remember thinking "well I hope its not ME ...that's all I need... the stigma of yuppie flu like that lady that got heckled from the audience on the Wogan show in the eighties". Its imprinted upon my memory as an example of modern day public stoning. I started researching it around November time a month before my referral to the CFS clinic so by that time I think any damage was already done.

I think we need biomarkers ASAP...everything hangs on it...everything else falls into place after that. Failing that the GPs need to be speeding up diagnosis and handing out pacing advice in advance of diagnosis as a preventative measure. I wonder whether that will ever happen?

 

@esther good idea, but no cigar in this case.

in order for the document not to seem patronizing, and a diversion of precious resources from more critical endeavors [please see my first post in this thread which is more analytical and addresses the supporters], and really depressing wrt the state of our overall progress, i would have to lower my expectations to peter white level. literally!

15 years ago, i would have had the same reaction.
30 years ago, i would have had the same reaction, but be unable to articulate it.
45 years ago, i would have had the same reaction, but be unable to articulate it, and felt more shame.

i hope you read the document. you might or might not agree, but perhaps you will be able to see where its detractors are coming from.

edit: fixed unintentional strikethrough.

 

I agree. I think we are saying the same thing so let me add more meat to your rebuttal.

Maybe the posters here are conflating PEM with a PEM induced crash? If we don’t agree upon the same definition of PEM, then it’s pointless to debate.

IMO, we can’t avoid PEM by behavior modifications alone, thus the name PEM avoidance toolkit seems misleading. We may be able to fend off a major PEM crash, by managing our expectations. ME is PEM. If pacing avoids PEM, then I am unclear what illness people are referring to?

With any illness, it’s wise not to over do it. This document serves to show that we need to better manage our expectations. But simply avoiding “not over doing it” does not cure ME.

Sure, I can avoid a major PEM crash, with Pacing, but at the end of the day I still have ME and I still have PEM.

Regarding behaviors we chose upon our early onset of ME, I see no evidence that supports a decision to “pace” or “not to pace”, has any impact to predict the long term future severity level of our ME. I understand personal narratives are valid, but how can one go back in time to confirm the hypothethis? We simply can’t. So why do we continue to beat up ourselves up for something we don’t know is true? I certainly don’t beat myself up about it.

 

now is simply now, or, what is, is.

 

One more thought. Maybe we could simply request the title of the document be renamed to “PEM Management Toolkit for Moderate to Mild Patients living with ME/CFS”

Seems the best compromise, I can think of, ATM.

 

I have seen a few people in recent years post good day/bad day photos side-by-side on social media. I can't remember whether there was a specific hashtag. It could be done again really at any stage.

 

I'm not sure whether "oversleeping" is that bad a thing in a lot of cases.

I would also question the example of the teenager who plays a bit of basketball now and again: I think they are playing with fire. But I suppose you need to adjust advice to reality.

But I think it contains some useful suggestions.

 

Agreed. The assumption that ME/CFS unrefreshing sleep can be relieved by strict sleep hygiene is mostly misguided, in my opinion.

A sleep specialist I know once told me sleep hygiene can be helpful, but is overrated even for healthy people. Sending patients home with a list of sleep hygiene recommendations rarely results in any significant improvement, he told me.

He's been diagnosing sleep disorders at a hospital in Oregon for 20 years.