Solve ME/CFS Initiative's ME/ CFS Patient Registry: You + M.E.

[Ravn]

Thanks so much for sharing that feedback! I'll pass it along to the research team and report back.

Thanks Emily. It's always nice to know that feedback doesn't just vaporise in Internet space somewhere

There's also an "add detail" function that I think is not yet available on the beta version? Did you see that on your version? My understanding is that for every day you report using the basic app function, there's an "add detail" area to elaborate on symptoms and triggers if you have the energy. We heavily emphasized "low movement" as a key priority during the app's development. "Low movement" meaning the lowest possible amount of scrolling/swiping/tapping so that using the app is not physically demanding to use.

We may have some lines crossed here. I think you may be talking about the actual app (not yet launched, and I'm not one of the early testers so haven't seen it), whereas I was talking about the Impact Tool on the website (https://youandmeregistry.com/m-e-impact-tool/).

Also, I'm still not clear on the answer to this question:

One question: If you had pre-registered, does that mean you have automatically joined the registry, or do you need to re-sign up on the website now?

 

[Emily Taylor]

Thanks Emily. It's always nice to know that feedback doesn't just vaporise in Internet space somewhere

We may have some lines crossed here. I think you may be talking about the actual app (not yet launched, and I'm not one of the early testers so haven't seen it), whereas I was talking about the Impact Tool on the website (https://youandmeregistry.com/m-e-impact-tool/).

Also, I'm still not clear on the answer to this question:

Aaaah! My apologies for the misunderstanding. You are right - I was talking about the app. My mom and I were not beta testers on the impact tool, but we were beta testing the mobile app. We actually have a new version to review this week! If all goes well, we should be on-target for the full launch next month.

The science team sent me this response to your pre-registration question:

Pre-registering does not mean that you’ve automatically joined the Registry, but it does mean that we will be able to easily get in touch with you as soon as the Registry is ready to accept participants. Over the coming weeks, we are completing testing of the online data capture tools with a small group. Once we process feedback and make any needed tweaks, we’ll be reaching out to the community with the go-live date.

 

[Louie41]

I tried the Impact Tool and almost stopped right at the first question because it asks about fatigue, the second question, too. That allergy to the f-word...

I'm not sure if your objection is to the concept of a feeling of having utterly no energy---of being so exhausted you can barely sit upright---or to the use of the word "fatigue."

I'm aware of the difficulties with the word "fatigue," but I sometimes wonder if we run the danger of rejecting what seems to be a universal feeling of lack or loss of energy at some time period. There is certainly research supporting the view that there is something wrong with the energy production system that we don't think is well described by "fatigue."

Whether or not I like the word "fatigue," what it attempts to describe has been, for me, an overwhelming factor since day one 30 years ago.

I wouldn't like to see us skew our understanding of our disease too off base because of language shortcomings. Let's see what the research tells us before we conclude what is or isn't an aspect of our condition. Maybe science will coin a new word that we can all agree is the perfect descriptor. I actually kind of liked Dauer. So Germanic and mysterious.........

 

[Ravn]

If all goes well, we should be on-target for the full launch next month.

Yay!

I'm not sure if your objection is to the concept of a feeling of having utterly no energy---of being so exhausted you can barely sit upright---or to the use of the word "fatigue."

I'm aware of the difficulties with the word "fatigue," but I sometimes wonder if we run the danger of rejecting what seems to be a universal feeling of lack or loss of energy at some time period. There is certainly research supporting the view that there is something wrong with the energy production system that we don't think is well described by "fatigue."

Whether or not I like the word "fatigue," what it attempts to describe has been, for me, an overwhelming factor since day one 30 years ago.

I wouldn't like to see us skew our understanding of our disease too off base because of language shortcomings. Let's see what the research tells us before we conclude what is or isn't an aspect of our condition. Maybe science will coin a new word that we can all agree is the perfect descriptor. I actually kind of liked Dauer. So Germanic and mysterious.........

The concept of complete lack of energy and utter exhaustion I'm all to familiar with, definitely not denying the impact of that. No, it's the way the word fatigue is commonly interpreted I'm allergic to, as in fatigue=tiredness. And all the minimising of our suffering that follows on from that.

And I worry about the effect the all-pervasive overuse of the word fatigue is having on research. There are still far too many studies that primarily look at fatigue (as in non-specific bad tiredness). And that's not just the BPS crowd, unfortunately. It's become a self-reinforcing circle. The more the word fatigue is used, the more researchers unreflectingly look at ME through the lens of fatigue (and often only fatigue), the more they use the word fatigue, the more... and now it's become such a deeply ingrained self-evident "truth" that ME is primarily about fatigue that even those who know better keep talking about fatigue with all the other issues involved mentioned as an afterthought, if at all. That focus on fatigue hasn't brought us any real insights, it's time to refocus* and to do that we need to fade the word fatigue from everybody's consciousness by not using it so much (and here in this post I've used it how many times? ).

*To take your example, there could be a refocussing on energy production problems, rather than on the downstream effects of them (fatigue). Like in mitochondrial diseases where the research focus is typically on problems with mitochondrial function and energy production (which doesn't mean anybody doubts for a minute that patients suffer significant fatigue).

 

[Sly Saint]

Owl's Head Solutions

Client
The Solve ME/CFS Initiative

Project
You + M. E. Registry Website

Background
Myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), is a debilitating disease that is underdiagnosed, underfunded, and not well understood. The Solve ME/CFS Initiative (SMCI) was launched to actively engage the entire ME/CFS community with the two-pronged goal of improving knowledge of its causes and aggressively expanding funding to support research that will lead to the discovery of safe and effective treatments.

To gather research data and drive interest within the healthcare community, SMCI created the You + M.E. Registry and Biobank, a collection of patient-reported data from people living with ME/CFS. It became clear to those behind the initiative that in order to better understand the disease and characterize subtypes, a large, rich data set gathered over time from thousands of people with ME/CFS and healthy controls would be needed.

https://www.owlsheadsolutions.com/casestudy/you-m-e-registry-website/

 

[Barry]

I tried the Impact Tool and almost stopped right at the first question because it asks about fatigue, the second question, too. That allergy to the f-word...

I've not looked at this at all, so bear that in mind re my comment here.

I agree the word 'fatigue' is much used and abused when it comes to ME/CFS. But if you were to ignore all the rhetoric around that word, then there is no doubt that fatigue is a component - amongst many components - that all sum to make ME/CFS the misery it is for so many.

Any investigation into a better understanding of ME/CFS that deliberately avoided the word 'fatigue', for misguided political correctness, would be a complete waste of time surely. My wife - the pwME - speaks of tiredness and fatigue etc, they are not forbidden words in her descriptions of how she feels. But of course they are by no means the only words - when she is too screwed to use any words much at all then it goes way beyond fatigue and tiredness. But they still have their place for her, and to exclude such words would seem to me as unscientific as using/abusing those words. The important thing is that symptoms like fatigue are investigated with complete impartiality and without bias, so that fatigue can be better weighted amongst other symptoms - that would not be possible if the word were avoided.

 

[Invisible Woman]

I see what you mean @Barry and while I don't deny that many ME patients do feel that "fatigue" is a component of the condition, it the THE component that has had the most focus over the last few decades and is one of the driving forces behind "lumping" conditions together and the development of MUS and IAPT. Even though there has been no attempt to define and differentiate what "fatigue" means to differentiate pwME.

I too used phrases, like - knackered, wiped out, floored, exhausted and so on to my husband. It wasn't until we were in an appointment together and he suddenly agreed with the consultant that I was tired a lot, I realized he was taking me at my word and didn't actually understand the nuances of how I was feeling. Indeed, how could he fully understand when a) he hadn't experienced it and b) I hadn't thought to actually explain.

This may not be relevant to your wife @Barry, but I will say I know a number of people who have ME who will use the words fatigue or tired in a formal setting as well as casually at home because they do not understand the implications of it. They know a little bit about ME politics and have neither the energy nor inclination to learn more. While very frustrated at the neglect of a wide range of physical symptoms and a lack of biomedical research they are often not aware that the focus on "fatigue" has been used to justify this neglect.

I appreciate you haven't looked at all this @Barry & what I have said may not be in the slightest bit relevant to you and your missus. This post is purely based on my own experience.

 

[Barry]

I see what you mean @Barry and while I don't deny that many ME patients do feel that "fatigue" is a component of the condition, it the THE component that has had the most focus over the last few decades and is one of the driving forces behind "lumping" conditions together and the development of MUS and IAPT. Even though there has been no attempt to define and differentiate what "fatigue" means to differentiate pwME.

I too used phrases, like - knackered, wiped out, floored, exhausted and so on to my husband. It wasn't until we were in an appointment together and he suddenly agreed with the consultant that I was tired a lot, I realized he was taking me at my word and didn't actually understand the nuances of how I was feeling. Indeed, how could he fully understand when a) he hadn't experienced it and b) I hadn't thought to actually explain.

This may not be relevant to your wife @Barry, but I will say I know a number of people who have ME who will use the words fatigue or tired in a formal setting as well as casually at home because they do not understand the implications of it. They know a little bit about ME politics and have neither the energy nor inclination to learn more. While very frustrated at the neglect of a wide range of physical symptoms and a lack of biomedical research they are often not aware that the focus on "fatigue" has been used to justify this neglect.

I appreciate you haven't looked at all this @Barry & what I have said may not be in the slightest bit relevant to you and your missus. This post is purely based on my own experience.

Yes, perfectly normal sensible words get hijacked by those with agendas who misuse them to promote their nonsensical arguments.

 

[Ravn]

Yes, perfectly normal sensible words get hijacked by those with agendas who misuse them to promote their nonsensical arguments.

You nailed it @Barry. The word fatigue has been hijacked and is being used against us, often innocently through ignorance, but sometimes on purpose. The singular focus on 'fatigue' in ME for the last few decades has swung the pendulum much too far in the direction of ME=fatigue that we need to swing it strongly the other way, away from fatigue, just to get a bit of balance again.

Nobody denies that pwME experience fatigue, exhaustion, feeling wiped out or knackered or whatever you want to call it. But people with any number of other conditions use the exact same words, and so do healthy people with non-pathological types of fatigue. Which makes the word 'fatigue' meaningless for our purposes.

We don't know - and cannot know until we have objective 'fatigue' markers - if or how our 'fatigue' sensation differs from that of people undergoing chemo or from that of people with MS for example. What does appear to differ is how our 'fatigue' is set off and then progresses after exertion - the delayed peaking effect - plus the overall symptom pattern it is always part of. That's where the focus needs to go: on the differences.

We're hampered by the fact that 'fatigue' to most people is just one thing, unlike a headache for example which can be several things. Even people who have never experienced a migraine know that a migraine is different from an ordinary tension headache, even if we can't truly imagine what it is like. And as a result migraine researchers don't mix up all sorts of headache sufferers in their studies, give them an aspirin, and then tell migraineurs that an aspirin should work for them, too, if only they believed strongly enough in its effect.

 

[TiredSam]

Yes, perfectly normal sensible words get hijacked by those with agendas who misuse them to promote their nonsensical arguments.

Fatigued, tired, exhausted etc aren't very exact, but I use "exhausted" and "knackered" to my wife to describe what kind of day it is (nobody else asks / knows, so it's not like I have to choose my words carefully with others). I don't think we should beat ourselves up for not being exact, or not being precise enough to distinguish how we feel from genuine tiredness / exhaustion. I don't think there are any words or any way of describing our symptoms which wouldn't have been hijacked by those with an agenda, so whatever we call ourselves, that's what'll be hijacked and twisted. And to be honest, when I'm symptomatic, the last thing I'm capable of is linguistic precision.

 

[yME]

For twenty plus years I have felt ME was very akin to exposure I experienced in 1979. In essence Exposure is body fatigue, or inability of body core to maintain temperature causing multiple physical and mental symptoms. Energy is unavailable due to lack of ‘food’ or unsustainable wicking away due to demand, PEM? I even get the same up tick in body temperature when exceeding my capability.

Yet linguistically when we say exposure, fatigue is assumed as just one symptom. Reason being exposure has been researched correctly, ME has not. Last week I corrected my gp as we were on the phone, so I was confidently rested. I think he finally comprehended the potential difference between mental fatigue (what ever that means) and a body lacking motional power. We need a new word like dauer until research catches up. continuing with the word fatigue creates an assumption in the doctors and public’s mind which is quickly and glibly passed over. Using Dauer creates that what? moment.

 

[Ebb Tide]

In the early months of being ill, I was having a phone appointment with my GP about extending my (in UK stupidly named) 'Fit Note' so that I would still receive sick pay although unable to work.

I was trying to explain how difficult basic tasks of daily living were, and giving the example of how hard washing myself was, as in showering or bathing.
He replied, "Oh, so you are feeling washed out" as he merrily typed that into my notes. I didn't have the energy to correct him.

 

[Andy]

 

[Ravn]

Looks like the Registry launch was more even popular than anticipated - and that's only in the US for now, the international launch is still to come.

Please accept our apologies - some of you encountered major bugs when registering with You + M.E. earlier today. It was not the experience we intended for you and we apologize for any difficulty or frustration you experienced.

We expected a great response from this community and you didn't disappoint! SO much so, that the number of people who simultaneously joined the Registry created a massive demand on the database, resulting in problems for some of you.

We are working hard with our developers to put a fix in place and we will update you as soon as it is ready. Our apologies for the inconvenience and stay tuned!

 

[Ravn]

when I'm symptomatic, the last thing I'm capable of is linguistic precision.

For those times I recommend the "grimace and grunt" method of communication .

But in a more public setting I think it does matter what we communicate. The focus on fatigue to the almost-exclusion of everything else for the last few decades has led to the general public equating ME=CFS=CF=fatigue=tiredness and therefore having no concept of our actual debility. It has led to researchers with an agenda doing the same and to operationalise even PEM as only fatigue. Worse, it has led to new and open-minded researchers being misled into believing fatigue is the single most important thing to focus on because they've read all the stuff that starts with a version of "ME is primarily characterised by unrelenting fatigue..." over and over and over again.

That's why I'm disappointed that an organistation that I have a lot of respect for, Solve, when they "designed the impact tool to help communicate the day-to-day of this disease in a visual way" they chose to start their little questionnaire with questions about fatigue. In fact fatigue is the only single symptom they ask about, not pain, not brain fog, not OI, not any other of the common single symptoms that stop us from doing the things we want to do. So, again, what the tool - unintentionally - communicates is that fatigue is the single most important factor to consider, never mind all the rest.

In fairness they do, later on, ask about PEM (which I don't consider a single symptom but a symptom complex which typically includes fatigue - so why single out fatigue separately?) and also about all the things we miss out on. That's a much better approach and had the whole focus of the impact tool been on that it would have given a better result.

For those who haven't played with the impact tool, here are all the questions it asks, before turning the answers into a nice graphic:

• What is the average frequency you experience fatigue over the course of a month?
• What is the average severity of fatigue you experience over the course of a month?
• How many times a month do you “crash” after physical, mental or emotional exertion (known as post-exertional malaise or PEM)?
• How long does it take you to recover from a crash?
• How many things do you miss out on in a month because of your health or because you are trying to avoid a crash?
• What are some of the things you miss out on?

A simple improvement would be to replace 'fatigue' by 'feel ill' in the first two questions. That wouldn't require any major changes to the tool.

I repeat, again, I'm not for a moment saying fatigue is not a major symptom, it is. My arguments are about the politics around the word fatigue.

 

[Andy]

Got suggestions on how Solve can improve this?

let us know what you think at registry@solvecfs.org

I have sympathy for Solve though as they will never be able to get it acceptable to all. For a very long time my best description of what was wrong with me was that I was tired all the time and I'd imagine it was, and is, the same for many people - so should Solve use language that a large number of potential users will relate to or should they use language that "expert" patients like us endorse? Ideally they would do both but that might not be possible.

 

[Ravn]

Got suggestions on how Solve can improve this?


I have sympathy for Solve though as they will never be able to get it acceptable to all. For a very long time my best description of what was wrong with me was that I was tired all the time and I'd imagine it was, and is, the same for many people - so should Solve use language that a large number of potential users will relate to or should they use language that "expert" patients like us endorse? Ideally they would do both but that might not be possible.

@Emily Taylor

Simply replacing 'fatigue' with 'feeling ill' would go a long way. No expert language required. Feeling ill also implicitly includes feeling tired so the fatigue isn't ignored but it's not highlighted either.
For the impact tool another option is to simply drop the fatigue questions altogether. The tool asks about PEM which implicitly includes fatigue already.
A good addition would be questions about fatiguability, i.e. how much/little you can do without setting off PEM.

The first option should be very easy to implement, just change a few words. The second option would require some minor coding changes as well so a little more tricky. The last option would require a bit more work so may not be realistic.

 

[Snowdrop]

Why not provide the opportunity to check off symptoms from a list from either the Canadian or International criteria?

That way new people are exposed to
a) the fact that criteria exist and
b) an opportunity to stop and think about what symptoms they do have that they may be not noticing/overlooking while subsuming them all under being tired.

 

[cassava7]

@Emily Taylor

Simply replacing 'fatigue' with 'feeling ill' would go a long way. No expert language required. Feeling ill also implicitly includes feeling tired so the fatigue isn't ignored but it's not highlighted either.

Good suggestion. One thing though -- even though feeling ill does implicitly include feeling tired, I personally think of "feeling ill" as "feeling flu-like symptoms". Soreness, shivers and fever, temperature dysregulation, hot flushes, headache and so on. I don't think of fatigue immediately, although it *is* badly present.

So maybe the form should mention it: what about "feeling ill with severe exhaustion"? Or "marked exhaustion"?

Why not provide the opportunity to check off symptoms from a list from either the Canadian or International criteria?

That way new people are exposed to
a) the fact that criteria exist and
b) an opportunity to stop and think about what symptoms they do have that they may be not noticing/overlooking while subsuming them all under being tired.

Yes! Most of the patients I talk to are young people (teens or 20's) and they have difficulty describing their symptoms precisely, that is, in somewhat medical terms. The Canadian and International criteria do a very good job at describing symptoms precisely without using overly complex terms, so I think using them is a good idea.

But they should only be used to explain symptoms, and not as criteria per se. Like guidelines, instead. Given that the clinical picture varies from patient to patient, there is no point in having to "tick X symptoms over Y lists in category Z" and saying you don't have ME if you don't have like 2 symptoms among those listed that aren't very common in all people with ME.

 

[Invisible Woman]

Yes! Most of the patients I talk to are young people (teens or 20's) and they have difficulty describing their symptoms precisely, that is, in somewhat medical terms.

I was the same and I was about 30 when diagnosed.

At one point I was fortunate enough to see a really good physio privately. She got me to focus on my symptoms rather than try to ignore them. The idea was that if I couldn't identify the symptoms be it pain, dizziness, weakness or fatigue than it would be harder to find a solution to ease them.

Until then, I was acting a bit like I used to in a gym doing reps - you know it feels a bit sore and you're starting to feel tired and shakey but you've only got a couple more to do kind of thing. Fine, if you're fit and healthy at the gym. Not so helpful with ME.

It's not about focusing on negatives, it's useful to identify OI issues from thyroid symptoms, anaemia and so on. For me at any rate.