Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

The DecodeME questionnaires are available online, here and here (@Andy I also used to be able to find them on the DecodeME website, for example here, but the links seem to have stopped working). I think it is fair to say that they've collected all the information people were asking about.

The questions on depression I found are the following:
  • "If a health professional has ever told you that you had any of the conditions below, please select all that apply" "Clinical depression" (Tick active or not active)
  • "During the past 6 months have you had any of the following symptoms?" "Depression" (Tick yes, no or prefer not to answer)
  • Then there is a specific "Depression and Anxiety" section asking questions about specific symptoms (I have not listed those questions)
  • "Did you experience prolonged periods of low mood or were diagnosed with depression before you had ME/CFS?"
    •  Yes, I experienced periods of low mood but wasn't diagnosed with depression
    •  Yes, I was diagnosed with depression
    •  No
  • "Have you experienced prolonged periods of low mood or have been diagnosed with depression after your ME/CFS began?"
    • Yes, I experienced periods of low mood but haven’t been diagnosed with depression
    • Yes, I was diagnosed with depression
    • No (Skip to Question 27)
  • "Please select which of the following applies to you:"
    •  The main reason for my low mood/depression is the impact that ME/CFS has
      on my life
    •  Other issues than ME/CFS are the main reason for my low mood/depression
    •  I’m not sure what is the main reason for my low mood/depression
  • "Did you experience prolonged periods of feeling anxious or were diagnosed with generalised anxiety disorder before you had ME/CFS?"
    •  Yes, I experienced periods of feeling anxious but wasn't diagnosed with anxiety
    •  Yes, I was diagnosed with generalised anxiety disorder
    •  No
  • "Have you experienced prolonged periods of feeling anxious or were diagnosed with generalised anxiety disorder after your ME/CFS began?"
    •  Yes, I experienced periods of feeling anxious but haven’t been diagnosed with anxiety
    •  Yes, I was diagnosed with generalised anxiety disorder
    •  No (Skip to Question 29)
  • "Please select which of the following applies to you:"
    •  The main reason for my anxiety is my ME/CFS (the symptoms and impact of
      the illness on my life)
    •  ME/CFS is not the main reason for my anxiety although it may still impact the
      way I feel
    •  I'm unsure if my ME/CFS is the main reason for my anxiety or not
 
EndME said:
(@Andy I also used to be able to find them on the DecodeME website, for example here, but the links seem to have stopped working)
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As you have found the DecodeME website is now part of the University of Edinburgh website here, and all previous content can be found there. There is a redirect set on decodeme.org,uk to take visitors to the new site but it looks like this does not seem to apply to other pages on the old site.
 
forestglip said:
Here are all the items (only from UK Biobank analysis) which contain the text "depres" and which were Bonferroni significantly correlated with ME/CFS, with links to descriptions of the items, in order of correlation with highest at the top.
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Does anyone else think some items on that list look a bit...absurd?

Feeling depressed for a whole week
That would draw in a goodly proportion of perfectly healthy women with premenstrual syndrome, who aren't depressed according to the clinical understanding of the term and wouldn't be treated for depression by any sensible doctor.

Seen doctor (GP) for nerves, anxiety, tension or depression
Ever had prolonged feelings of sadness or depression
Professional informed about depression
These would include people suffering from grief, stress at work, family problems, and undiagnosed conditions that doctors assume are depression by default. None of them necessarily are depression.

If you change the word "depression" in those questions to "rash" or "cough" or "backache" it looks over the top to begin with, and then a bit sinister. As if you're being interrogated for even the faintest signs of recusancy or something.
 
forestglip said:
Here are all the items (only from UK Biobank analysis) which contain the text "depres" and which were Bonferroni significantly correlated with ME/CFS, with links to descriptions of the items, in order of correlation with highest at the top. The last item is negatively correlated.

The most correlated item, for example, refers to being diagnosed by a "professional". The webpage shows a screenshot of the question which includes "By professional we mean: any doctor, nurse or person with specialist training (such as a psychologist or therapist)."
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Thank you!

It seems like there are a lot of ways for any ill person to be labelled with depression.

And if it only asks for having ever ticked off one of those boxes, the gene might as well be considered a «general unwellness» gene. It might even be a «woman feeling unwell» gene with all we know about the bias against women in healthcare.
 
Sean said:
One of the most remarkable and unacknowledged features about ME/CFS patients is our extraordinary psychological and moral resilience in holding up under such extreme adversity, with so little real hope, so much hostility and abuse and abandonment, and for so long, decades for many, lifetimes for some. Far from being pathetic weak little snowflakes we are models of perseverance and fortitude under extreme adversity.

How often do you see that being recognised and factored in by psychs?
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Never. It's been one of the most harmful lies about us. We are as strong a testament to human resilience as it gets, and we have literally been cast aside for "not trying". I hate this lie so much. The liars who say these things about us know nothing about us.

It's even well-documented enough, except evidence barely matters, only perception and politics. As textbook as "blaming the victim" ever gets.
 
Sean said:
One of the most remarkable and unacknowledged features about ME/CFS patients is our extraordinary psychological and moral resilience in holding up under such extreme adversity, with so little real hope, so much hostility and abuse and abandonment, and for so long, decades for many, lifetimes for some. Far from being pathetic weak little snowflakes we are models of perseverance and fortitude under extreme adversity.
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This. Precisely this. Even if we never get justice for what has been done to us, I hope one day we get to a point where our resilliance is at least acknowledged.
Kitty said:
People with depression don't tend to talk about feeling ill, whereas people with ME/CFS usually feel ill the whole time.
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Is this true? I am genuinely asking, I began to feel unwell at the same time as getting depression and was told it was very common for pw depression to feel unwell. And I have non MECFS (afaik) friends who have been told the same.
mariovitali said:
Speaking of depression I wonder if questionnaires used, specifically asked whether episodes of depression occurred before MECFS and not after getting it.
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My depression appeared before my ME/CFS. It may well have been part of a prodromal onset as I got a lot of other odd neuropsychiatric symptoms at that time but I was undoubtedly depressed.

Turtle said:
The best question to ask is.
What would want to do if you were cured?
A pwME/CFS would come up with a 50 items bucket list
A depressed person would come up with: I don't know
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I think the truth is a little more complicated than this, though broadly along the same lines. I still had dreams and ambitions when I was depressed but I couldn't effectively work towards them.

So I might still have said that if my mental health issues were cured I'd start gigging again, or travel. But right now I could give you a long list of all the places I'd travel to, or all the musical projects I'd start right down to what instruments I'd use, recording techniques etc. And those details were the things that were hard to visualise when i was depressed.



FWIW I was a DecodeME participant but they initally declined me, then invited me during the second batch of recruitment.
 
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V.R.T. said:
Is this true? I am genuinely asking
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I'm not a sufferer so I can't really know, but none of the depression-prone people I've known and worked with ever complained about having the 'flu-like symptoms, pain, and crippling orthostatic intolerance that characterise ME/CFS. You don't tend to see them in descriptions of depression symptoms either.

Depression is multifaceted, but you'd think ME/CFS and PEM symptoms would be distinctive enough to be separated from it. Perhaps not in a single consultation with a newly ill patient bewildered by a whole array of bizarre symptoms, but that's true of many conditions.
 
Kitty said:
I'm not a sufferer so I can't really know, but none of the depression-prone people I've known and worked with ever complained about having the 'flu-like symptoms, pain, and crippling orthostatic intolerance that characterise ME/CFS. You don't tend to see them in descriptions of depression symptoms either.
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This sounds right to me, as someone who has had depression. I wouldn’t be surprised if it could cause some mild aches, but I doubt it would be anything on the level of ME.
 
Kitty said:
I'm not a sufferer so I can't really know, but none of the depression-prone people I've known and worked with ever complained about having the 'flu-like symptoms, pain, and crippling orthostatic intolerance that characterise ME/CFS. You don't tend to see them in descriptions of depression symptoms either.

Depression is multifaceted, but you'd think ME/CFS and PEM symptoms would be distinctive enough to be separated from it. Perhaps not in a single consultation with a newly ill patient bewildered by a whole array of bizarre symptoms, but that's true of many conditions.
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I didn't have noticeable PEM/flueyness but I did feel quite queasy a lot of the time, feeling faint, lots of random aches and pains.

But as I said I'm not sure I had 'pure' depression so I'm probably not the best example.
 
EndME said:
The DecodeME questionnaires are available online, here and here (@Andy I also used to be able to find them on the DecodeME website, for example here, but the links seem to have stopped working). I think it is fair to say that they've collected all the information people were asking about.
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I wonder if a question about hours of time lying down would be good for future studies. I think either time lying down or step count might be the best indicators of severity we currently have (though step count is probably too difficult for people to estimate without using a tracker).

Since the hallmark feature of ME/CFS is worsened symptoms after exertion, and since body position is a form of exertion, I would expect time spent in more 'active' body positions to be a decent marker for how negatively exertion affects a given person.

Even if this is subject to issues with recall, it might lead to less heterogeneity and ambiguity than the more subjective approach of trying to fit yourself into one of these boxes:
  • How severe is your illness? Please choose the group you fit most often, or that best describes how severe your illness is overall, even if the detail doesn't exactly match your experience.
    • Mild – People with mild ME/CFS care for themselves and do light domestic tasks (sometimes needing support) but may have difficulties with mobility. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often have reduced hours, take days off or use the weekend to cope with the rest of the week.
    • Moderate – People with moderate ME/CFS have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work or education, and need rest periods, often resting in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.
    • Severe – People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.
    • Very severe – People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.
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Maybe something like:
  • How many hours of the day are you in an upright position? This means total hours spent in any position other than lying down, for example all time spent sitting, standing, or walking combined.

    For example, if you spend every hour of the day lying down, you would answer 0 hours upright. If the number of hours is different on different days, choose a number that best represents a typical or average day. Round to the nearest whole number. If you do not know, select "Not sure".
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Of course, there's a minimum response of 0 hours, which might include both severe and very severe cases. If there's a need to differentiate, maybe the subjective classification could be combined with the hour answer.
 
forestglip said:
I wonder if a question about hours of time lying down would be good for future studies. I think either time lying down or step count might be the best indicators of severity we currently have (though step count is probably too difficult for people to estimate without using a tracker).

Since the hallmark feature of ME/CFS is worsened symptoms after exertion, and since body position is a form of exertion, I would expect time spent in more 'active' body positions to be a decent marker for how negatively exertion affects a given person.

Even if this is subject to issues with recall, it might lead to less heterogeneity and ambiguity than the more subjective approach of trying to fit yourself into one of these boxes:


Maybe something like:


Of course, there's a minimum response of 0 hours, which might include both severe and very severe cases. If there's a need to differentiate, maybe the subjective classification could be combined with the hour answer.
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+1
 
forestglip said:
I wonder if a question about hours of time lying down would be good for future studies
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I'm not sure about that. I think this will only apply to those with OI, but won't tell us much about everyone else. It can be added as an additional symptom, but it's not universal.

I can sit upright all day long, but I can't watch TV and can't walk more than 1,500 steps while I'm at home and even less if I have to leave the house.
 
forestglip said:
I wonder if a question about hours of time lying down would be good for future studies. I think either time lying down or step count might be the best indicators of severity we currently have (though step count is probably too difficult for people to estimate without using a tracker).
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I think this is a good idea.

I’m not sure if this only applies to me, so maybe it’s not helpful, but it might be good to word the question in a way that accounts for differences in how frequently someone has to lie down. I am moderate, and I improved substantially this year, but I would show up on your question as zero hours lying down before and after the improvement. The change in my health is obvious if you look at how frequently I lie down for short periods (usually 10 min), though. I imagine you’d get a large span of people from the mildest to moderate people who lie down multiple times a day all reporting zero hours lying down.
 
OrganicChilli said:
I'm not sure about that. I think this will only apply to those with OI, but won't tell us much about everyone else. It can be added as an additional symptom, but it's not universal.

I can sit upright all day long, but I can't watch TV and can't walk more than 1,500 steps while I'm at home and even less if I have to leave the house.
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I think for a single question its a good proxy for severity.

Nothing will be a perfect proxy. Because you can’t measure severity with a single question. But I think estimate of hours laying down is not a bad one. Obviously your situation shows why it’s not perfect. But I don’t think that discounts it,

Like it’ll give you pretty perfect seperation between very severe and moderate people to sort by hours laying down. I don’t think many other single questions can do that. (step count is too unreliable to be done without objective measuring so can’t just ask).
 
OrganicChilli said:
But the same goes for time spent laying down, doesn't it? Eg @Verity needs to add up their 10 min rest periods.
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I think most people could estimate hours upright to within about 2 hours. For step count, I personally have almost zero idea how many exact steps I walk. Whenever I try a tracker, I'm surprised by how many steps there are in a short walk around the house.
 
Verity said:
I am moderate, and I improved substantially this year, but I would show up on your question as zero hours lying down before and after the improvement. The change in my health is obvious if you look at how frequently I lie down for short periods (usually 10 min), though. I imagine you’d get a large span of people from the mildest to moderate people who lie down multiple times a day all reporting zero hours lying down.
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I think this might be backwards from what I said. Since lying down includes sleeping, I thought it'd be too much math to try to add up time spent lying down while sleeping plus throughout the day. So instead it's time spent not lying down.

So if you are mostly up from when you wake up at 8 AM until you lie down for bed at 10 PM, that's 14 hours. And if you normally do about ten short lie downs of 10 minutes each, maybe you could subtract one or two hours from that.
 
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