NHS Scotland Glandular Fever advice pages

[bobbler]

https://www.nhsinform.scot/illnesse...ndular-fever#complications-of-glandular-fever

I've linked to the complications page first, but the rest of its is here: https://www.nhsinform.scot/illnesses-and-conditions/infections-and-poisoning/glandular-fever

*EDITED to add in actual example in quote box:

Prolonged fatigue
More than 1 in every 10 people with glandular fever will experience prolonged fatigue, which lasts for six months or more after the initial infection. It is not known why fatigue lasts longer in some people.

Some experts think it may be a form of chronic fatigue syndrome (CFS). This is a poorly understood condition that causes persistent fatigue and a range of other symptoms, such as headaches and joint pain.

Adopting a gradual exercise plan to rebuild your strength and energy levels may help prevent and reduce prolonged fatigue.

I know this isn't 'news' on this illness. But as one of the biggies related to ME (and that is bad news if you already have ME) I was interested to come across this and be outraged that a similar attitude issue seems to be going here here - with blase comments about 'if you get really bad one key part is to grade up your exercise to ward off fatigue or 'cfs''.

I'm just outraged at the stupidity said with such utter arrogance here. This will undermine even those who are smarter than the person writing it who might ignore it and be offered no support at all should they have glandular fever that lasts more than 2-3 weeks (which more me used to be the time for acute tonsilitis, not GF - even if it is all on a scale).

To pass off and start writing anyone still tired at these increasing timescales needs to do more - in such a way that will infer to others that those who are more ill longer (which will have been caused by that bad advice) are to blame for it due to not doing enough (when the reason would have at least partly been the opposite - again due to bad advice). The implications are huge.

Anyway I could go on, but would like others comments/discussion on this topic (and didn't know where to put it).

Seems obvious this interacts two-way with the issue/ideology/problem children/push underlying ME/CFS.

It's also something massively relevant to tackle with the MPs groups because if you don't list how 'rooted' the bigotry has spread then I think it all needs to be rooted out and extinguished together. This is about more than one illness (for all their excuses) whatever hatred bigotry or agenda it is backfilling into other things (as well as noting MUS) meaning someone getting GF one day is walking into a process whereby bigotry and cutting off access to investigations starts at 3 weeks due to BPS

- yet research/science is making it clear it is implicated in a lot of serious things. And should maybe on be on a register for 'watch' of long-term outcomes or at least better flagged and categorised in histories and note things to mean something (don't know if US treats it differently re: history and notes)? if only just so people can't write the above nonsense because the stats can debunk the 'thin air made up stuff'

 

[Arnie Pye]

This is bizarre. I've never knowingly had glandular fever, but for as long as I can remember I have known about the long recovery period it requires in some people and just accepted it as part of that particular disease. I didn't realise that there were people classifying it as CFS or ME or (the obvious implication being made) malingering.

It is insane that at one point in the complications page it says :

Most people with glandular fever will recover in two or three weeks and won't experience any further problems.

Adopting a gradual exercise plan to rebuild your strength and energy levels may help prevent and reduce prolonged fatigue.

and then later on the same page it describes the risk of enlarged spleen which may rupture :

A ruptured spleen usually occurs as a result of damage caused by vigorous physical activities, such as contact sports.

It is therefore very important to avoid these activities for at least a month after the symptoms of glandular fever begin.

Be particularly careful during the second and third week of your illness, as this is when the spleen is most vulnerable.

The text isn't internally consistent, and suggests that the risk of enlarged / ruptured spleen may be about to get substantially higher in Scotland.

 

[Ariel]

I had ME/CFS originally diagnosed following glandular fever. I can't remember how long I had been ill for but it was over 6 months and less than a year. It seemed to be common knowledge that you can develop ME afterwards. This was like 20 years ago. What has happened?

 

[Ash]

Me too @Ariel, and it was my GPs plural who told me not to do too much when I went to them not recovered at 3 and at 6 months they said I was at risk of “ME” -they used that term-and at around nine months told me I may already have it.