Clinical History Segment Extraction from Chronic Fatigue Syndrome Assessments to Model Disease Trajectories , 2020, Chalder et al

Open access, http://ebooks.iospress.nl/publication/54132

 

this assumes that medical records are cogent, correct and the specialist has some depth of knowledge about the condition- given the many instances discussed here I am not sure that this is a sound enough foundation to base much upon
asking questions is a skill - leading questions is an issue , particularly given how CF scale works.
If I am up for strong coffee on Friday I may have a peak; work too invasive til then.

 

Ignoring as mentioned by Amw66 that our records are generally misleading, it's very telling that the discussion does not even... discuss... the most significant factor found in this experiment. All the others are only brought by the clinicians or therapists so they can mostly be ignored, they're the only ones talking about anxiety and depression all the time and this is the main reason they even find their way into records.

So it found the highest significant factor to be an infection. The suicidal consequence of being ill and maligned, gaslighted, ostracized and discriminated has been known for a long time as a consequence of ME.

So as usual when it contradicts the BPS ideology, the results are not interesting. But ultimately because those records are sprinkled with nonsense brought only by the clinicians and which matter little to the patients, this method is useless other than highlighting the fact that most of those concepts are artificially represented simply because of the obsessive clinical focus on those things that matter little.

Is Chalder paid by the number of paper she publishes? They are all excessively low quality but she basically pumps several dozen per year. Who even thinks this is a good idea?

 

Fair fa' your honest, sonsie face,
Great chieftain o the GIGO-race!
Aboon them a' ye tak your place,
Painch, tripe, or thairm:
Weel are ye wordy o' a grace
As lang's my arm.

 

The groaning trencher there ye fill,
Your hurdies like a distant hill,
Your pin wad help to mend a mill
In time o'need,
While thro' your pores the dews distil
Like amber bead.

 

A weird twist, then: publish AND perish.

 

Only because you lot reinvented it as such. You renamed it & then pretended that the name described it accurately.

 

All the trolling and discrimination we get is down to the single fact that we are seen as just feeling tired. Everyone feels tired. People with other diseases, like MS, cancer and so on feel fatigue too as well as all the other HORRIBLE things yet they don't moan about it. People read about us and think they are tired too but they get on with life.

When I go to see a doctor they think I feel tired they have no idea about the actual problems I have so it is impossible to have a conversation with them, never mind getting any help.

If they are willing to deal with something, say, vertigo, they do not do it in the context of ME, they teat it as a separate disease.

 

And yet whenever I see those diseases, especially MS and RA, mentioned in the wild, fatigue and brain fog are the most common problems I see, whether it comes from the patients themselves or family. There were a few papers some months ago speaking to that, that to patients they are the most disabling symptoms while the specialists don't even care for those, not even on their radar. All because of the chronic and fluctuating nature that makes planning impossible.

This belittling of symptoms, especially fatigue and neurological symptoms, has hurt everyone, including those with "respectable" diseases. There is a need for a massive shift in attitude in all of medicine, one that treats symptoms with respect and pays attention to them as relevant information not only to the impact of the illness but in research. I have no doubt that paying rigorous attention to symptoms would yield many advances in research, by being able to match signs with symptoms.

 

@rvallee Certain doctors could start by treating taxpayers with respect, and then work their way up to respecting patients' and their symptoms.

A friend has interstitial cystitis (IC), and is under a well-regarded urology department. The NHS is currently shunting IC into the "MUS" mausoleum, so my friend was given an IAPT questionnaire asking if she finds herself awake at night because of her symptoms. "Yes," she ticked, dutifully - because she has to pee once an hour, and occasionally doesn't go straight back to sleep between bathroom visits. My friend tried to explain this to the consultant, but he had gone into his BPS subroutine and didn't hear a word she said - psychogenic symptoms, case closed, and another success for the BPS pyramid scheme: a set of surveys for a grad student to churn through and uncover a hitherto unknown link between anxiety and interstitial cystitis. An excellent use of NHS resources! Except for patients with IC - but they're only exploiting the secondary gains of urinary incontinence, right?

 

Rvallee, I was being sarcastic about the horrible symptoms . Not the symptoms themselves, but they way they are perceived by healthy people. A friend's husband was upset because a relative had been diagnosed MS which he thought was a death sentence. He was invited to go to an MS event and was shocked to discover that his preconceptions were all wrong.

We, however, shock people by how sick we actually are if they ever come in contact with us with an open mind.

Calling interstitial cystitis an MUS just shows how totally inept the whole concept is. Inflammation of the bladder wall could have many causes but psychological distress is not one of them.

in fact, many of the MUS takeovers are of diseases which involve chronic inflammation. they are not medically unexplained, they are medically untreatable which is a totally different concept.

It is ironic this is happening when the mechanisms of chronic inflammation are being teased out.