Stanford ME/CFS Initiative: PEM Avoidance Toolkit

Yes, I agree. In the US, this is what the public sees and acknowledge as ME, (what you refer to as newly ill) and apparently what the Stanford ME Clinic sees and acknowledges as ME.

 

There is more work to be done in educating others. Many think these examples ARE realistic. This what I have been trying to say, but have done a poor job, obviously.

 

All great points, as usual, @Invisible Woman

We need to be a part of the patient input process to overhaul this doc. It’s giving an impression of ME that does not apply across the board to all PwME.

 

Futhermore, to add my thoughts about the Stanford ME Clinic, and perceptions about ME; on one of my visits I saw a well groomed woman wearing business attire (pressed suit, perfect hair and make up). She drove herself, obviously. She said she was a participant in one of the Stanford ME studies, but she was there that day waiting to see one of the ME providers in the ME Clinic. (So obviously she was not a healthy control)

 

I have two heart rate monitor watches, one with zone alert and one without. On a day to day basis, I wear the latter because it is silent. The other one would be beeping constantly for me to cease whatever activity set it off . . . which is pretty much everything lately.

When you are solely responsible for your personal care, that of your pets and the running of the household, how on earth can a pwME get by without falling into PEM territory?

The zone alert watch was still a good buy. I wear it when I am in company, to freak my guests out.

 

Sorry, I'm not understanding what you are saying here, that you don't think that this woman could have ME?

 

I fully understand the need to avoid PEM. But I also think we need to remember that avoiding PEM will not cure your ME. It may certainly stop you becoming more severe though.

I have an issue with the use of HR monitors that I've mentioned elsewhere (please forgive if it feels like I'm banging on). On the whole I think they are good but only as a rough guide because:

1 many of them are not accurate enough to monitor HR precisely

2 many of them have a slight lag before registering the increase/decrease in HR

3 it is easy,once you start using this as a tool to tell you when to stop, to suddenly find yourself using the tool to tell you it's ok to keep going, because your HR is within the your specified range. For all we know even when HR is in range there may very well be other confounding factors that may trigger PEM.

4 you may have another undiagnosed disease or be on medication that affects HR. Even if your disease is diagnosed some can fluctuate (like hashimotos), so there may be a period of time before noticeable symptoms kick in, but your
HR is lowered. Even though your HR is lowered you may have a lowered PEM threshold. I have fallen into this trap.

 

Yeah, agreed @ Trish. They can be very useful and I don't want to seem like I don't agree with em. I do have one & I use it (though not necessarily all the time -as when I'm already in survival mode just doing what I have to and nothing else it doesn't really make any difference then).

I got my self into a really bad state last year and, because I hadn't thought about how I was using the HR monitor, I made it all so much worse than it needed to be. Not the HR monitors fault, it's now I was using it. If I had known (or at least considered) the points I made above I could have saved myself a fair bit of pain and misery.

 

I can drive short distances, and I made it a habit to look decent when leaving the house (it's something I also do when I have an infection - plus, I nearly always have a color in the face, can't change that). It's maybe not smart not to look sick when sick. But I don't like looking sick...
Still I daresay I am sick, but not severe ME.
Jen Brea looks great most of the time. So...?
Let's not judge by the outside.

Oh, maybe I misunderstood you?

 

After rereading my post, I could have used the word “misperception” instead of “perception”. From my view (whether accurate or not), in the Stanford ME Clinic, I observed people who didn’t look sick. I have also sat in the waiting rooms of 2 other “lesser known” ME doctors, where I observed patients who looked and acted on the borderline of severe.

It’s a stigma, we face, because I feel we have a spectrum disorder. If there was a camera in the waiting room of the ME doctor “lesser know” the public could witness a posted sign about being quiet for the respect of other ill patients. The public could see patients who are very sensitive to light, noise, and vibrations.

I realize I ramble sometimes. Thanks for pointing out my lack luster attempt at explaining myself.

Edited to add:
Yes, I agree that we see Jen in the media looking great. I don’t know what she looks like afterwards though, or the price she pays for spreading ME awareness. I am not in the media, so I don’t bother with fixing my hair, putting on makeup, or nice clothes. I am just happy to arrive at my medical appointment (in one piece).

If I rest a lot, and put in a small effort, I can look like the healthiest person of my age group. It’s a total farce, because I can’t sustain the image.

So the challenge is, how can we show the public what a bedbound and a homebound PwME looks like? And if there are energy fluctuations, how do we best report them to the public?

Edited to add:
And how do we update the Stanford PEM document to include all levels of PwME, not just the patients who were healthy enough (and privileged enough) to participate in providing feedback at the various meetings.

And how do we ensure a full representation of the PwME spectrum are participanting in ME studies? (Not just the ones healthy enough or privileged enough to do so).

 

If I may add a bit more about perceptions and misperceptions.

I feel if the Stanford ME PEM document get published “as is” on the Stanford ME Clinic webpage, it will create a misperception as to what ME really looks like. I feel it will only serve to downplay our goals, which are an urgent need for $250M annually in research funding. I don’t feel an urgent need to study ME, by reading the Stanford ME PEM document. If you knew nothing about ME, after reading the document, would you have an impression that ME has an urgent need?

This reminds me of the early nineties, when the Nurses (Union) decided they had enough of the way nurses were portrayed in the media. I accompanied a nurse friend to the big nurses convention that year, in San Francisco. A speaker got up and told the audience how they were going to change the image of nurses. At the time, in the media, I recall nurses appeared more as sexual objects, buxom blonde with her front zipper pulled down and her voluptuous breasts spilling out. In the media, nurses wore short and tight uniforms; they bent over frequently, as to say “here I am bent over, ready and waiting for you”

It was a massive task to make the transformation and go after Hollywood. But the nurses did it, and were highly successful.

I often wonder if we should team up with the nurses union, because they have fought off stigma, and also have been treated and continue to be treated poorly by doctors a.k.a. God

 

If I read the toolkit initiative document, along the rather awful examples, I would be left thinking of ME as being a relatively minor condition where changing lifestyle would pretty much sort it out.

 

The same advice is given to menopausal women and it doesn't really for that either

 

i think "activity management" can in practice be a dangerous distraction from discovering fundamental pathophysiology, clinically useful biomarkers, epidemiology [and characterization of the whole disease not just those who attend specific clinics], causation, and treatment.

i'm concerned the nih is eyeing this as a fob off. just tell people to manage their activity and we've cured the disease.

at best, given priorities, no legitimate funder needs to fund this research direction much, given the miniscule level of overall funding. a lot of bang for buck can be had by telling sufferers that pem exists -- this just requires fixing a website -- and they will figure out a great deal of "activity management" on their own without professional guidance and the turf creation.

but more fun and profit arises from funding people to create turf, which consists of building up a workforce of counselors who will tell people they are incompetent at living their lives and must be told when to go to the bathroom. or app creators. or whatever. these people will defend their turf and argue for more and more funding.

you can immediately see where this can lead: "activity management" also gives the woo people a foot in the door again. in fact, while the lipkin app is /described as/ useful to correlate infections or whatever, please keep in mind that this activity app idea was already done before by the uk clowns a few years back around the time i posted this http://thekafkapandemic.blogspot.com/2012/04/smedley-discovers-brain-scan.html .

just because a line of funding is described in biomedical terms, and even in connection with biomedical researchers, doesn't mean it cannot be transmuted into something useful to those who oppose progress. we have seen it time and again.

as with all policy everywhere, research funding directions must be evaluated not only on the good it could do if it goes perfectly, but also on the harm it could cause in practice if it does not.

i think it is just too political a disease to ignore this. funders have their own ideas of what they want. we don't always know their priorities.

and as much as we'd prefer scientific freedom, researchers tend to do what funders fund.

 

I also love the way they make it sound like it's some great new idea they've come up with!

Nope some of us were doing that 20 years ago and we're still ill.

In my opinion we don't need to reinvent the wheel, especially one that didn't really change much. Better work to on the PEM definition or biomarkers.

Please - no more behavioural guff!

 

Thanks for asking. I would not want the finely dressed woman, whom I observed that day, to represent THE “poster child” of ME. We need to find a way to show the full spectrum of PwME, and if we have daily fluctuations (look great in public for one hour) then the public facing image vs the private facing image needs to be included. For some of us who are lucky enough to be able to temporarily appear in public as vibrant and healthy, the actual reality that may follow is a private suffering PEM crash lasting hours/days/weeks.

As a thought we perhaps could start taking selfies and videos, like Jen, because we as patients need to show the world what ME looks like. It would need to be part of a larger campaign, that possibly S4ME and/or MEAction could manage?

MillionsMissing MillionsFound MillionsAdvocating

We could portray how we each quietly advocate from our beds, alone, with no resources. We are an online community that lifts each other up. We can show how deflated and sick we feel, at times, but with the help of each other, we can also feel empowered (sick but empowered)

We could show how severe PwME are to ill to advocate.

We can show our empty refrigerator or cupboards. How we go to bed hungry. How dirty our hair is. How messy our homes are. How we are alone and have no help.

We need to blast these messages out to the rest of the world. This IS the reality of ME, and now that you are aware....then this is what we need! (home healthcare, food, money to pay utilities, money to pay rent, ride to the doctor, help with housing, etc) ... what ever each one of us needs.

 

Well I really think you are being quite negative there IW no wonder you aren't getting better. Here have this green smoothie (gluten, dairy and calorie free with no added anything apart from chlorophyll and water) and cleanse your colon. Then just do 10% activity more each day and you'll be right as rain. Oh and make sure you think happy thoughts and go to bed early to get lots of sleep...that's the ticket!

We all get tired you know.