The Times: One in 40 teenage girls has chronic fatigue

[Valentijn]

You obviously missed my comment about budgetary constraints.

Junk science is junk science. The results don't become any more useful simply because the author theoretically couldn't afford anything better. It was a complete waste which adds nothing to our knowledge about ME/CFS.

Though it does serve as a good example of how badly these researchers conduct their studies.

 

[A.B.]

It's not the engineer's fault the bridge collapsed. The budget wasn't enough for all the required building materials. Don't criticise so harshly, instead tell us how YOU would have done better within budget limits.

 

[Hip]

Junk science is junk science.

I would not call it junk.

I think from this survey we can be pretty certain that 1 in 40 teenage girls in the Bristol area have very significant levels of fatigue that has not been explained by other medical conditions.

That in itself should raise interest in finding out more.



But in terms of improving the methodology, what I would have done was to examine more closely the 1 in 40 teenage girls that did come out positive on the fatigue questionnaire (that would have only been 5000 / 40 = 125 teenagers), and have those 125 teenagers then evaluated by a medical professional using the NHS or CCC criteria for ME/CFS.

Such a step should be relatively inexpensive and quite feasible, and would have greatly raised the quality of the study.

Such a follow up on these 125 teenagers is still possible now.

 

[Cheshire]

I'm a bit upset Hip because as you said many times before you love to engage into discussion for the purpose of discussion. I'm not here for that. This study who diagnoses people suffering from mere fatigue and conflates that with ME CFS has been widely spread by the media, and do us a lot of harm.

I'm not part of those who have certitudes about what MECFS is. But what I'm certain of is what I suffer from is not mere fatigue. And that whatever I suffer from has robbed me of my life, my job, my capacity of walking and worst of all has deprieved my two kids of a healthy mother. This is no joke.

If you can't see what's wrong with diagnosing people with just fatigue and then claim it's CFS, there's nothing I can add.

Edit: Realised my words may be ambiguous. "This is no joke" refers to the seriousness of the discussion, not at all to imply that the level of disability of the people in the study is a joke compared to us.

 

[user9876]

I would not call it junk.

I think from this survey we can be pretty certain that 1 in 40 teenage girls in the Bristol area have very significant levels of fatigue that has not been explained by other medical conditions.

No if you read the paper it says 1 in 40 teenage girl's parents answered a question suggesting they may be suffering from fatigue. The discluded people with drug or alcoholism problem and anorexia but no other diseases.

When they removed those answering questions suggesting they may have depressive symptoms the prevalence fell to 0.6% so that is some of that level of fatigue may be explained by depression. Other pieces may be explained by other diseases which are not filtered for.

 

[Hip]

When they removed those answering questions suggesting they may have depressive symptoms the prevalence fell to 0.6% so that is some of that level of fatigue may be explained by depression.

I must have missed that bit (and the other thread on this subject seems to have been deleted — anyone have a another link to the study details?).

So you are saying that when they excluded those answering the questionnaire who may have had depression, the final fatigue prevalence was 0.6%. That figure is more in line with the 0.2% (1 in 500) prevalence that previous studies have found.

 

[Hip]

If you can't see what's wrong with diagnosing people with just fatigue and then claim it's CFS, there's nothing I can add.

I can see the limitations of this study, certainly, but my main interest here is whether there may be an increase in prevalence of ME/CFS in the Bristol area of the UK.

Obviously this study in its present form can only be considered a rough assessment of ME/CFS prevalence levels (but it could easily be made more robust by the approach I outlined above).

 

[Cheshire]

The times has released another article by Dr Mark Porter:
http://www.thetimes.co.uk/tto/health/advice/article4673980.ece

It's under a paywall, but Russell Fleming twitted lots of extracts here:

https://twitter.com/i/web/status/692046009724243968

 

[eastcoast12]

Yes. You criticized, so let's hear how you would have done it, within a reasonable budget.





I agree. I had not seen the diagnosis methodology used when I wrote my above comment. Nevertheless, I think this data is interesting, even if we have to bear in mind its limitations. I'd prefer rough data to no data. At least that may then spur further studies.





You obviously missed my comment about budgetary constraints.

If you wanted to check how prevelant Alzheimer's is in a certain area, a questionnaire about how forgetful you are will get you data but it will be completely useless for a study on Alzheimer's. Yeah it data but it's completely irrelevant. This wouldn't even be considered rough data. Rough data from an open trial or from a non controlled study would be useful but this is simply not. If there are budgetary constraints you simply don't move forward. To me these types of studies seem to be doing more for the egos of certain people rather than for the advancement of science.

 

[Valentijn]

Obviously this study in its present form can only be considered a rough assessment of ME/CFS prevalence levels (but it could easily be made more robust by the approach I outlined above).

No, it is completely irrelevant to ME/CFS. "Fatigue" is far too vague to be even a rough indicator of ME/CFS.

This study is about self-diagnosed (or mother-diagnosed) fatigue. It cannot be extrapolated to anything else.

 

[user9876]

I must have missed that bit (and the other thread on this subject seems to have been deleted — anyone have a another link to the study details?).

So you are saying that when they excluded those answering the questionnaire who may have had depression, the final fatigue prevalence was 0.6%. That figure is more in line with the 0.2% (1 in 500) prevalence that previous studies have found.

There are a few threads since quite a lot of press coverage.

I posted this on a different thread

This is a really shockingly poor paper I am surprised that peer reviewers didn't just cry when presented with this. I really cannot understand how they could possibly get to publish this work.

Children with CFS had higher levels of psychological problems, life difficulties and school
absence (Table 3).

May be this sums up the paper. They take children who parents say their child was "feeling tired or felt she/he had no energy” which resulted in not doing stuff and then label them as having CFS. They then correlate this with "psychological problems, life difficulties and school absence". If a teenager was depressed then they would seem to fit the "CFS" category and then have "psychological problems".

After imputation, depressive symptoms (SMFQ score ≥11) were reportedby 67.4% of children with CFS, compared to 15.3% in those without CFS, and children with CFS had 11-fold higher odds of depressive symptoms (OR 11.0 (5.92, 20.4)), compared with children without CFS (Table 3). The

So basically they stick a CFS label on teenagers with fatigue and the accredit symptoms to CFS.

Or they do give an alternative view

The imputed prevalence of CFS of ≥3 and ≥6 months’
13
duration, if all children with depressive symptoms 287 were classified as not having CFS, was
288 0.90% (0.60%, 1.20%) and 0.60% (0.37%, 0.84%), respectively

So those are possibly better figures but would still cover other issues/diseases

Of course social problems could lead to a level of fatigue or statement of such. Or perhaps teenagers say 'i'm too tired for that' when actually they are just not interested in their old hobby or sporting activity but don't want to say that to their parents who were keen on it.

 

[Hip]

@Cheshire
As an aside: your location is in France, and assuming you are French (or French-speaking), can I ask, do you post much on French forums about ME/CFS, with regards to (justified) criticism of psychological / biopsychosocial causal models on ME/CFS?

I ask this because a while ago I was reading that even for conditions such autism, in France the cause of this condition still often viewed by researchers in a Freudian context, looking psychological more than biochemical causes of autism.

We don't hear much from France (or Germany for that matter) in terms of ME/CFS research, and I wonder if this is because in France, ME/CFS is more often seen as a condition having psychological causes.

Anyway, the point I am getting at is that it would be great to have French speakers "spreading the word" in France about biochemical perspectives on ME/CFS (and likewise in Germany).

 

[Hip]

No, it is completely irrelevant to ME/CFS. "Fatigue" is far too vague to be even a rough indicator of ME/CFS.

I doubt if you have any studies to back up your statement, so really this is just a matter of opinion. You could be right, but I don't think anybody knows the answer here.


The question would be: are there many diseases other than ME/CFS that hit teenagers and cause long-lasting fatigue so significant that it causes them to miss lots of days of school and activities.

If not, then fatigue could well be a reasonably good indicator of ME/CFS in teenagers.

But as mentioned, I would like to see those teenagers in the study with fatigue tested for ME/CFS with NHS or CCC criteria. Then we would know just how well long-lasting major fatigue is as an indicator of ME/CFS in teenagers.

 

[alex3619]

You obviously missed my comment about budgetary constraints.

This is not a big issue. You don't diagnose everyone. Just those who appear to have ME or CFS or whatever you claim. So we are talking over 100 teenagers. All of these have medical doctors, in a country with free medical care. I do not see why you could not post a referral to each doctor and ask them to apply the NICE criteria, which are the standard clinical diagnostic criteria in the UK. Then ask the patients to get back to them.

Now getting docs to use the London criteria, or those whacky Canadian criteria, that might be an issue. Most docs in the UK probably wont use them.

Let me say though that arguing that this survey method is OK with the limited funds is like saying bad research is OK if you cannot afford good research. This is how bad research gets passed off and excused.

Either you do good prevalence studies, or you don't. When the CDC did this they found nearly all the claimed CFS patients did not have CFS when they were clinically examined. I think, iirc, this was the Georgia cohort.

 

[Hip]

I do not see why you could not post a referral to each doctor and ask them to apply the NICE criteria, which are the standard clinical diagnostic criteria in the UK. Then ask the patients to get back to them.

That would be a good idea. Presumably just for ethical reasons, a study like this should be contacting the patients found to have very significant fatigue and suggesting that they visit their GP and get assessed for ME/CFS and other conditions that can cause significant prolonged fatigue.

When the CDC did this they found nearly all the claimed CFS patients did not have CFS when they were clinically examined. I think, iirc, this was the Georgia cohort.

Yes I remember that study, it found a prevalence rate of 2.54% (1 in 39) in the state of Georgia, USA, using a telephone questionnaire.

Was there a follow-up study then, that clinically examined these Georgia patients and found most did not have CFS?

 

[alex3619]

I no longer remember the studies in detail, and I am too tired right now to go chasing them, doing without sleep while waiting for a support worker to turn up. One of the studies got patients in for clinical assessment, but I am not sure if it was the Georgia cohort or the Wichita cohort.

 

[Valentijn]

The question would be: are there many diseases other than ME/CFS that hit teenagers and cause long-lasting fatigue so significant that it causes them to miss lots of days of school and activities.

Most other chronic diseases could have the same effect, including mood disorders. That's why "fatigue" is useless, diagnostically: it's a symptom of pretty much everything. And "chronic fatigue" isn't much better, since it's a symptom of pretty much everything which is chronic.

Fatigue studies are meaningless for ME/CFS.

 

[justy]

I have lived with so far three teenagers and I can tell you for certain that at some point hormones kick in and they don't like going to school, and they cant seem to do anything anymore and they want to sleep all the time, and they don't want to go to Scouts/Guides/Church/The Library/Granny's house anymore. This is all completely normal behaviour, and yet if asked, a lot of parents would fail to see that 'this is just teenagers' and might say 'they are suffering from more fatigue than usual' if asked in a questionnaire.

Considering the fact that in the UK at least 'parental rights' to act on behalf of a child are not real in law, why didn't they just ask the teenagers themselves?

Teenagers in the UK are under a lot of pressure at school and from the wider society - my kids are always tired from school, and yet they eat healthily and I try and make sure they get enough sleep - but good luck with getting a 15 year old to go to bed and actually sleep just because you told them to! The system isn't geared up for teenagers body clocks - it's no wonder they feel tired!

Would also be interesting to hear what time of year the questionnaires were answered as anyone living in this miserable country will know - it is cold, dark and wet for 7 months of the year and everyone feels ground down by this.

 

[Keela Too]

Just adding the link here to the press release:

http://www.bristol.ac.uk/news/2016/january/chronic-fatigue-syndrome.html

Important Quote:
"The researchers point out that the diagnosis of CFS was not made by a doctor, but is based on responses to questionnaires sent to both the teenagers and their parents."

Yet at the start of their press release they say:
"In what is believed to be the biggest study of chronic fatigue syndrome (CFS) – also known as myalgic encephalomyelitis (ME) – in children to date........"

And on Twitter Dr Ester Crawley said:
"ME affects 1 in 50 16 year olds, is more common in girls and those from poorer families." followed by the above link.

Several people responded on Twitter to challenge the assertion that the study was anything to do with ME. As far as I am aware, she didn't ever reply.... but instead deleted her account.

The report also says "Those with CFS missed, on average, more than half a day of school every week."
So the average school attendance was almost 4.5 days a week, & certainly over 4 days ...

I would say that most severe ME pupils couldn't even attend school for half a day a week (and I'm thinking of the 25% here) so if that is the case there how on earth could the average of the ME population be an attendance of almost 4.5 days a week?

That could only be so if the cohort included a massive number of children who did not have ME. Which of course rings true to how they selected their cohort. I wonder did they even get a single severe ME patient in their survey?

Basically it is meaningless, and I was saddened to see an ME charity applaud it:
"Sonya Chowdhury, chief executive of Action for ME added: ‘This important study, analysing data from parent- and child-completed questionnaires, highlights the increased prevalence of ME among 16-year olds, pointing with even greater urgency to the need for effective treatments."

However that said she did at least go on to point out:
"The reality is that many young people miss considerably more than half a day of school a week, while for the most severely affected, their disabling symptoms are compounded by the isolation and loss that comes with being house- and/or bed-bound.’"

In my view the study is meaningless with regards to ME. Socially I guess it is useful to know that so may pupils are struggling with fatigue. Perhaps the modern way of life is at fault.

 

[justy]

The report also says "Those with CFS missed, on average, more than half a day of school every week."
So the average school attendance was almost 4.5 days a week, & certainly over 4 days ...

I would say that most severe ME pupils couldn't even attend school for half a day a week (and I'm thinking of the 25% here) so if that is the case there how on earth could the average of the population be an attendance of almost 4.5 days a week?

Yes I picked up on this too. Lots of children are missing 'on average; half a day of school a week. I wonder how they worked out this 'average' did they take all the days missed by all the children over a certain period and 'average' it out? or what? 9statistics are not my strong point but im sure you all get what I mean here)

My daughter was bedbound with (possible) M.E at 15 - she NEVER went back to school and missed out on a lot of education. It really affected her chances after school, and despite being a very bright girl she never made it to university as her health was too precarious.