"My experience of chronic fatigue syndrome" anonymous 16 year old

A young person who thinks there are effective treatments for cfs.
https://bmjpaedsopen.bmj.com/content/5/1/e001165

 

It sounds like the individual is still ill, but is just better able to manage what energy they have by pacing. The stuff about "boom-bust" just sounds like parroting what they were taught by a therapist.

 

Hmmm. Its an anecdote of a young person? If so, probably no need to be to critical, but a couple of things.

“it is an extreme tiredness (loss of energy and motivation”

Loss of motivation? No.

Then I would say that I don’t like the boom and bust, cause it sort of sounds like you’re suddenly supposed to have some kind of superpower. If I were to use boom and bust, I would stress that the “boom” simply means not being in PEM at 8-10. That’s why I prefer push-crash that describes it better. But yes it is true that you probably and no matter what, will use more than you can on a “better day”, then pay hard.

“The treatment of CFS is incredibly effective if people are able to access it.”

Hmmm?

Try to get some help. If you had a broken bone, you would not hesitate going to a doctor for help, and you should not for CFS, especially as treatment has a similarly high recovery rate.

Yes, you should obviously try getting help, but not quite as easy as suggested. Recovery rate?

 

Comparing seeking help for a broken bone and a complex medical condition is not a very good analogy.

 

Wonder which of the two major paediatric clinics this is from? South West or UCLH.

When I say major I mean that in terms of generating PsychoBS, and threatening families when their youngsters don't improve. Yes this is still happening. You have 3 options, inpatient stay, social services or psych therapy!!!

Neither of these renowned clinics show much sign of changing their approach, other than slight alteration in terms used for their "therapeutic" approaches.

Of course, this n=1 personal experience will have far more weight than the thousands of people with ME, who have noted their experiences of harm in surveys run by ME organisations. Such PwME have been to clinics run on the same basis, but their actual physical deterioration is NOT recorded by the clinic.

My bet would be on Bath/Bristol.

 

I don't get a good sense of how much improvement this person has had in their level of function and over what period of time. (Did they say how long they have been sick?)
Basic sleep hygiene has not helped most of the PwME I know.
Also apparently they don't get PEM from cognitive activities as they can read and listen to music and both when "resting" but couldn't do their schoolwork. Not sure what to make of that.

 

Exactly what Crawley et al said several times, failing to mention that this is based on nonsense statistics.

 

I agree. Very important. Would like to know a whole lot more about duration, approach and so on. So often “miracle-stories” points to and sells this and that. But it’s my belief that many of these stories simply is down to a good start, meaning X and Y had the chance to be careful early on and for some time. That’s like winning the lottery, and have the potential of making an enormous difference, but this is often missed out or “disguised” as something else.

And yes, quite interesting the reading and music. I would agree that it brings a lot of joy, but unfortunately not for very long. If not PEM if reading a lot, well that’s peculiar.

 

The cognitive load of 'passive' reading (i.e. leisure) is vastly different IME to that of 'active' reading (i.e. trying to learn).

As is the cognitive load of trying to understand something new (where it's important to get it right or it's pointless) vs reading a story (where it doesn't matter).

Reading isn't just about seeing and recognising words.

I often struggle with both types (I haven't read a book recreationally for years as the drain is too high, high enough so it causes memory issues etc. making it a pointless activity if sustained). Non recreationally I dip into things on occasion, the most frequent being this place but I can't handle threads/posts above a surface level (so a lot of the more 'technical' threads/posts are completely beyond me).

I am surprised that others are not aware of the difference between different types of reading content and the different drains they cause.

 

Yes, good points. Reading for understanding complex things can be almost impossible when in constant PEM. Experienced that a lot at work in the end before disability.

I occasionally try to read some novels. That’s only on “good days”, more precisely “good hours....”. In tiny bits, 10-15 minutes before stopping . So it takes a lot of time, but sometimes makes it and that’s joyful.

Reading as resting good is not the case. I could maybe agree that just skimming a paper is better resting and recharging than just “lying there”, but not sure of that either.

 

I should clarify - I quite understand the difference between reading for pleasure and reading to learn. But the experience of the PwME I care for is that when resting, they cannot read - for pleasure (even re-reading familiar things) or to learn. It is too draining. And listening to music is overwhelming when resting for them.
So if this person can read for pleasure and listen to music when resting they are at quite a different level of function than many PwME I know (in addition to those I care for).
And if their level of function is that different, it would seem that during their times available for activity (they seem to indicate they started with 4 active hours/day), they might be able to learn during some of that time.

 

When pacing was explained to me I was told resting is exactly that resting, not watching TV, flicking through a magazine, reading or listening to music.

Those are things people might do to relax and a healthy individual might find those activities more restful that their usual ones but it is not the rest a pwME means.

This is one of the reasons pacing can be so very hard. For me anyway. Resting , proper resting is difficult and not because I haven't lear relaxation skills. No. Resting is hard because there is nothing to distract from how horribly ill I feel.

However, if I don't do it I will feel even more horribly ill so....

 

qoute from invisible woman

"This is one of the reasons pacing can be so very hard. For me anyway. Resting , proper resting is difficult and not because I haven't learn relaxation skills. No. Resting is hard because there is nothing to distract from how horribly ill I feel."
this exactly is what makes resting a forced thing rather than a personal choice .it really is hard to just lie still and put up with so many symptoms for hours on end . i end up watching game walk throughs or playthroughs on u tube because they take little cognitive effort and are not important enough for me to care about missing words .

 

It would have been helpful if the author had cited some sources. We might have learnt from whom he had learned that he could reasonably generalise beyond his or her personal experience.

 

I have yet to read the article ( will later ) but the immediate takeaway is that snippets quoted above are a good illustration of Sonya Chowdhury' s remark that children use different language to describe their illness.

Given Bath / Bristol have updated their website to include long Covid this is an advertising campaign to capture a new market.

It's basic pedagogy . Children use the language they are given until their experience otherwise forces constructs to move. The extracts show is the common language of taught experience a la NHS paediatrics.

Spot the learning curve.
https://www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/leaflets.asp?menu_id=1

This is why it is slightly concerning to have Bath develop scales and outcomes that are based on kids descriptions - as they provide the descriptive language.

Eta - the sheets are used in Scotkand so I suspect universal use by paediatricians

 

I wonder what the intended readership of BMJ Paediatrics is. How many 16 year olds are aware of the journal, and how many read it? Do many 16 year olds wake up one morning and decide, unprimed, to write a piece for the BMJ. Does the priming have to be done before application of the gloss?

 

When I was 16, I'd have written a very angry piece about the ignorance of doctors that would almost certainly have been rejected...

 

Did the ME Action clinic survey take in paediatrics - or was it only adults?
The contrast may be illuminating