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CFS/ME starts most often age 10-19 & 30-39: Norwegian population study

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
I think we need to consider a lot of noise or at least a skewing of the second peak to the right due to a long delay in diagnosis - perhaps more so for us long standing cases. My own experience was that investigation was on a symptom by symptom basis until the first suggestion (Fibro then ME then CFS) after 10 years or so.

If this is a more recent cohort then diagnosis may be quicker.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Why do you think that?

Well, if not, the presumably nobody would make a link to the virus. If severe fatigue happened two years later it would be very hard to know if it had anything to do with a prior illness, wouldn't it? Mild fatigue after a virus would just be a bit of post viral fatigue.
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
Even if the graph is skewed and the two peaks, perhaps in particular the second peak, are further to the right than they should be, there are still two peaks.....
 

lansbergen

Senior Member
Messages
2,512
Well, if not, the presumably nobody would make a link to the virus. If severe fatigue happened two years later it would be very hard to know if it had anything to do with a prior illness, wouldn't it? Mild fatigue after a virus would just be a bit of post viral fatigue.

But what if it starts as mild and get worse after every attack. Would doctors realise it is getting worse instead of better?
 

Kati

Patient in training
Messages
5,497
Well, if not, the presumably nobody would make a link to the virus. If severe fatigue happened two years later it would be very hard to know if it had anything to do with a prior illness, wouldn't it? Mild fatigue after a virus would just be a bit of post viral fatigue.
i disagree with your reasonning, since in many cases patients get ill suddenly, manage ok for a little while, and following more insults fall into the severe and very severe category.

Here is a narrative from my own expericence. i got sick in Nov 2008 with a clear cut EBV infection. Lab showed IgM reactive, and IgG non-reactive. i had liver involvement, requiring pain meds for a few days. I was reassured that 6 weeks later i would head back to work. Attempts to return to work at 8 weeks failed.I was given 1more month. Meanwhile I had a galbladder attack and diagnosed with a large ovarian cyst. A second attempt to return to work failed though I went up to 6hours a day on that attempt. Then 5months after my initial EBV infection, i had the mother of all gallbladder attacks and was hospitalized for 2weeks, and got the GB out. I started having orthostatic intolerance symptoms, depth perception problems, cognitive issues, photophobia, heat intolerance from the 3rd weeks after surgery. And from there, it got worse.

While folks are expected to recover, in my case it didn't happen. Some patients have good days and bad days, i don't think it's my case. My illness is pretty constant and I would advance i am getting a little worse from year to year despite treatments.

This is just one experience, but I am sure there are many, many more like me.
 
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Forbin

Senior Member
Messages
966
Here's what it actually looks with men scaled up by 3:

A larger sample size increases the accuracy with which it represents the population from which it is obtained. So, a larger male sample size might well look more like the female graph than the 3x scale male data. On the other hand, it might look less like the female graph, but there is a suggestive similarity between the two at the different sample sizes.

I guess I'm just trying to say that the graph of the smaller male sample probably looks noisier because graphs of samples of smaller size look noisier in general.
 
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Valentijn

Senior Member
Messages
15,786
Well, if not, the presumably nobody would make a link to the virus. If severe fatigue happened two years later it would be very hard to know if it had anything to do with a prior illness, wouldn't it? Mild fatigue after a virus would just be a bit of post viral fatigue.
There might be a bit of a misunderstanding regarding of what constitutes "severe" ME. It generally means bedbound, or at least at the worse end of housebound/couchbound.

In my case, I had a nasty infection, missed a week of class, rested another week during the holiday break, then felt pretty good and started back to class. I was walking briskly for 20-30 minutes per day at the time, I was in a language class 4 days per week and volunteering on the 5th day, and spent about two hours per week-day on public transportation. That was not even remotely severe ME.

But my legs started burning very painfully when I was hurrying to the bus after class, and that didn't stop after a few days when I expected my muscles to get accustomed to it again. My brain started cutting out in class. And when I got home I would feel sick and my skin was ice-cold for hours, and I'd be a bit crashed the next day. But I was still quite active for at least two months after the nasty infection and the onset of symptoms - at the mild end of ME.

During that time, symptoms got progressively worse. When my legs kept burning, I started walking slower and catching a later bus. That helped a bit with immediate symptoms. But OI kept getting worse, and PEM. My class ended, but I was still at my volunteer job for a couple months. I started having OI "attacks" at my volunteer job, even though it was mostly desk work done while sitting down. I'd walk to the bus stop afterward and fight to keep standing up since there was nowhere to sit. Then I'd get home and be very sick afterward for several days. That was still mild, though getting closer to moderate.

Eventually I couldn't keep doing that. But I still walked to the hair salon down the street to get my hair cut. I went to the shops with my fiance driving and walked around. I walked 500 meters to the GP's office when I had appointments in the middle of the day. I was sick afterward with unmistakable ME symptoms, but it was still closer to mild than severe.

After a year or so I was mostly housebound. I got too sick after walking to the GP, so my fiance would drive me there and back, then go in late to work. I was still sleeping upstairs, though it was a struggle getting up and down them. At some point I realized baths were making my heart rate stay elevated for hours or days afterward and switched to showers while sitting on a stool. I would garden for 15 minutes at a time by sitting on the ground and scooting around to get to the weeds. I could still vaccuum a bit, and do laundry, and go for rides to the shops or around the park in my mobility scooter. That was moderate.

Eventually I gave up on the stairs. Showers happen once every 5 days - basically when my hair gets too greasy. If I'm too sick to get up the stairs, my fiance washes my hair in the kitchen sink. Usually I'm too sick to use my mobility scooter, so we used a wheelchair for essential outings, and a couple occasions when I wasn't up to using the scooter but felt good enough to go to the shops. The wheelchair was only a 6 month loaner, so that's gone now. I sleep in the living room, and I try to tidy up downstairs during the day, but cleaning stuff isn't possible anymore. I usually can't handle any gardening. I can make dinner, but only if I start it early in the day. After a couple months of getting delivery every night, we got a crock pot (slow-cooker) so I can throw in meats, sauces, and spices early in the day and at a slow pace, then drop in a starch and pre-chopped veggies closer to dinner time. This is moderate-severe.

Severe would be bed-bound. Able to get to the bathroom, and maybe grab prepared food from very close by, but that's it. Very severe would be completely reliant on help with eating (if able to eat at all) and getting to the bathroom.

I don't think most of us go directly from having the initial infection to "severe" symptoms. We go from the infection to having weird and obvious symptoms which interfere with our lives. Then a lot of us experience a relatively quick decline during the following months. That quick decline slows down, but often continues at a slower pace. At some point, people stabilize at mild, moderate, severe, or very severe ... or somewhere in between those categories.

So I disagree with the experience being described as "severe fatigue". The symptoms weren't severe at first, and "fatigue" is not a word which ever occurred to me to use in describing my symptoms.
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
These are good points people are making about severity maybe being the diagnosis-point rather than onset. At first I felt tired for six months and had to lie down in the afternoons for an hour or so. Then I had a flu-like illness which put me in bed for a few days but then left me not housebound but not able to work more than an hour a day and got me a diagnosis of post-viral fatigue syndrome. It dragged on and I got a diagnosis of ME (reasonably quickly - within six months of the flu-like illness, I'd guess). Things have got worse since.

I'd find it hard to say at what point I got ME: was it when I first started feeling tired? Or when I got the flu-like thing?

A source of confusion is that the diagnostic guidelines (can't remember which - maybe all of them) include severity, in that you have to be at least 50% disabled to get the diagnosis. That's not the case with other diseases, presumably, but severity is being used as proxy marker for the disease.
 

Sidereal

Senior Member
Messages
4,856
I have no idea when fatigue started. Like Valentijn it was never a word I associated with my condition. When I first heard about CFS, I read the official websites which use the Fukuda criteria and it didn't sound like what I had. As a result, I carried on trying to diet & exercise my way to health. It was only when I read CCC/ICC a few years ago that I realised I had ME/CFS and the harm I had been doing to myself all those years.

Problems began with frequent/never-ending infections. I didn't have fatigue per se for several years after symptom onset. I don't remember distinct PEM (as in exacerbation of symptoms 24 hours or more after activity) although I did have very prolonged time to recovery after any activity compared to other people.

At first I "only" had tachycardia + shortness of breath upon minimal exertion and the feeling of heavy limbs and burning leg pain when trying to walk at anything but a very slow pace. Huge problems climbing stairs. Sore throat. Balance problems, often falling on the street or staircases. I vividly remember walking down the street as a teenager and seeing everyone--literally everyone including pensioners--walking faster than me. If I tried to keep up with other people, I would develop autonomic symptoms, pain and sore throat.

Years later more obvious OI symptoms kicked in, PEM, brain fog/executive dysfunction/loss of intelligence, constipation, insomnia...

My symptoms began before the internet so really I had no interpretation at all for what was wrong with me or whether anything was in fact wrong with me. My life was largely a mystery to me. What minimal interaction I had with doctors said I was deconditioned. Not true. I never spent much time in bed at all and continued to struggle on trying to live as normal until severe POTS and diabetes insipidus kicked in 17 years later. It's only then that I became deconditioned due to enforced bed rest though initially even with extreme symptoms I still tried to do stuff around the house and go to the local shop or pharmacy to get a few items (only a few minutes away on foot) but even that small amount of activity was causing scary exacerbations of symptoms so I gradually kept falling back and my world shrank to my bed.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I have created a poll for people to state how long after getting symptoms they were diagnosed.

22 votes so far, and about 50% of respondents waited over 3 years for diagnosis. I know it's not scientific, but when compared with this 2009 onset poll, which found that about 60% believed that they had an acute infectious onset, is interesting at least. 82% so far in my poll waited over 6 months.

So if the respondent groups are similar, even acute-onset people usually waited over 6 months. Although my brain is packing up now - please correct me if I'm wrong!
 

lansbergen

Senior Member
Messages
2,512
22 votes so far, and about 50% of respondents waited over 3 years for diagnosis. I know it's not scientific, but when compared with this 2009 onset poll, which found that about 60% believed that they had an acute infectious onset, is interesting at least. 82% so far in my poll waited over 6 months.

So if the respondent groups are similar, even acute-onset people usually waited over 6 months. Although my brain is packing up now - please correct me if I'm wrong!

Acute onset can start mild. My acute onset could not be missed but it took me several years to realise it was more than a recurring ordinary infection
 

Jonathan Edwards

"Gibberish"
Messages
5,256
There might be a bit of a misunderstanding regarding of what constitutes "severe" ME. It generally means bedbound, or at least at the worse end of housebound/couchbound.

Yes, I was not talking in those terms, just severe enough to be sufficiently convinced there was something wrong to go and see a doctor. I quite agree that there are significant delays in diagnosis for a lot of patients but I am doubtful that the mean delay would be enough to skew the graph seriously. Of course if there is no diagnosis it does not even appear on the graph. I am also reasonably happy with looking at a profile just for the severe end of the problem because that is what we do in RA. There is no absolute cut off between normal and a disease of this sort and it is probably more informative in terms of working out cause to look at profiles for the severer forms of the illness rather than trying to include everyone because borderline cases introduce a lot more noise with uncertainty.

Shifting the adult peak 5 years does not change the pattern that much anyway. For the adolescent peak I am sceptical that this really starts five yeas earlier at 5 because the upstroke is so sharp and I think if a child is significantly unwell some sort of diagnosis is likely to be given within at least 18 months.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Age vs hospotalisations for Graves' Disease (based on hospital discharge data)
http://www.ncbi.nlm.nih.gov/pubmed/20056533

I'm still trying to find decent data from a population based study for Graves' Disease.

graves' disease hospitalisations.jpg
 

SOC

Senior Member
Messages
7,849
A source of confusion is that the diagnostic guidelines (can't remember which - maybe all of them) include severity, in that you have to be at least 50% disabled to get the diagnosis. That's not the case with other diseases, presumably, but severity is being used as proxy marker for the disease.
Quite frankly, I find it bizarre that to get a diagnosis at all, presumably when one is still in the "mild" stage of the illness, one has to be 50% disabled. Very few people anywhere in the world would consider 50% disabled as mild, yet with ME we get labeled "mild" when we are impaired to a degree most healthies can't imagine. o_O Language appears not to be our friend with this illness.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Yes, I was not talking in those terms, just severe enough to be sufficiently convinced there was something wrong to go and see a doctor. I quite agree that there are significant delays in diagnosis for a lot of patients but I am doubtful that the mean delay would be enough to skew the graph seriously. Of course if there is no diagnosis it does not even appear on the graph. I am also reasonably happy with looking at a profile just for the severe end of the problem because that is what we do in RA. There is no absolute cut off between normal and a disease of this sort and it is probably more informative in terms of working out cause to look at profiles for the severer forms of the illness rather than trying to include everyone because borderline cases introduce a lot more noise with uncertainty.

Shifting the adult peak 5 years does not change the pattern that much anyway. For the adolescent peak I am sceptical that this really starts five yeas earlier at 5 because the upstroke is so sharp and I think if a child is significantly unwell some sort of diagnosis is likely to be given within at least 18 months.

Considering how much noise there must be in the data, given likely delays in getting a diagnosis and the gradual vs acute onset issues, it makes that peak in the adult female graph seem all the more remarkable.

What the heck happens to women that age in biological terms that would set them so apart from other women and from men?
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Considering how much noise there must be in the data, given likely delays in getting a diagnosis and the gradual vs acute onset issues, it makes that peak in the adult female graph seem all the more remarkable.

What the heck happens to women that age in biological terms that would set them so apart from other women and from men?

Whatever makes MS peak at that age? I don't think it can be a peak of anything so much as a maximum of some risk factor due to crossing over of event probabilities. I guess that sounds obscure. The analogy that I tried out yesterday is making mistakes in a foreign language. To begin with you do not make mistakes because you don't even know the words. In the end you don't make mistakes because you know all the words. In the middle you make the most mistakes. The immune system and the brain learn lifelong and it might be that certain mistakes are most likely have way through.