MSD Manual (US): Chronic fatigue syndrome - updated Apr 2020 and Sept. 2021

The Merck site has a page for consumers and one for professionals.

@dave30th Both of your links in the sentence above go to the Professional Version. I've noticed when reading the Merck site in the past that the links from the Professional page to the Consumer page and vice versa for several different conditions are incorrectly linked, so that may be where the problem arose.

 

thanks, I think i just put the wrong link in there. seems to work now, at least for me!

 

It works for me now too.

 

modified sept 2021

"
Treatment of Chronic Fatigue Syndrome

• Cognitive-behavioral therapy
  
  
• Graded exercise
  
  
  
• Drugs for depression, sleep, or pain if indicated "

https://www.msdmanuals.com/en-gb/ho...nic-fatigue-syndrome/chronic-fatigue-syndrome

 

Maybe one for @dave30th

 

I am surprised that they do not recommend as treatment a two week diving holiday in Grenada. There is about as much evidence for that as there is for anything else. Perhaps the insurance companies would pay.

 

(partial deletion of comment for brevity)

I think its an example of what has been called Zombie Science. Science kept alive and even thriving from social, economic, political or other influences. Science is a human endeavour, and not immune from other powerful forces.

 

MSD Manual - Consumer version

Quiz: Chronic fatigue syndrome




https://www.msdmanuals.com/en-nz/home/multimedia/quiz/chronic-fatigue-syndrome

 

aagh! scary

 

possibly the worst Youtube video......

Symptoms of Chronic Fatigue Syndrome | Merck Manual Consumer Version
5 seconds long so you have to be very quick to turn off autoplay before it takes you to the next video.
and all it has is a picture of a grey haired woman with her hand on her head.

"The main symptoms of chronic fatigue syndrome are feeling a strong need to rest even after sleep; having very little energy all day long; being too tired to do daily activities; tiredness that gets worse with exercise or stress. This tiredness lasts more than 6 months. Learn more about what causes chronic fatigue syndrome here: https://mrkmnls.co/3ORaYIf "

Code:

https://www.youtube.com/watch?v=rceZZmks0m8

 

I don't get the youtube link coming up that you have posted, when I click on the blue link - unless I missed it based on your description.

Instead I can find these (I haven't read them) :

Quick Facts (for patients) : https://www.msdmanuals.com/home/qui...nic-fatigue-syndrome/chronic-fatigue-syndrome

Full Details (for patients) : https://www.msdmanuals.com/home/special-subjects/chronic-fatigue-syndrome/chronic-fatigue-syndrome

For Professionals : https://www.msdmanuals.com/professi...nic-fatigue-syndrome/chronic-fatigue-syndrome

 

the link to the video is in the 'code' box.
eta: you need to copy and paste it.

 

This post copied and following posts moved from
Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
_______________

Merck Manual: Chronic Fatigue Syndrome (Professional version)

By Stephen Gluckman , MD, Perelman School of Medicine at The University of Pennsylvania
Reviewed/Revised Jul 2023

Under "Treatment of Chronic Fatigue Syndrome"

• Acknowledgment of patient's symptoms
  
  
• Sometimes cognitive-behavioral therapy
  
  
• Sometimes graded exercise, limited to avoid a setback
  
  
• Medications for depression, sleep, or pain if indicated

To provide effective care to patients with CFS, physicians must acknowledge and accept the validity of patients' symptoms. Whatever the underlying cause, these patients are not malingerers but are suffering and strongly desire a return to their previous state of health. For successful management patients need to accept and accommodate their disability, focusing on what they can still do instead of lamenting what they cannot do.

Cognitive-behavioral therapy and a graded exercise program have been helpful in some studies but not in others (1, 2). They should be considered for patients who are willing to try them and have access to the appropriate services. Depression is common and expected in any patient with a disability. This should be treated with antidepressants and/or psychiatric referral. Sleep disturbances should be aggressively managed with relaxation techniques and improved sleep hygiene (see table fibromyalgia) can be treated using a number of medications such as pregabalin, duloxetine, amitriptyline, or gabapentin. Physical therapy is also often helpful. Treatment for orthostatic hypotension may also be helpful.

Unproven or disproven treatments, such as antivirals, immunosuppressants, elimination diets, and amalgam extractions, should be avoided.

Treatment references

• 1. Vink M, Vink-Niese A: Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open 5(2):2055102918805187, 2018. doi:10.1177/2055102918805187
  
  
• 2. Larun L, Brurberg KG, et al: Exercise therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews Issue 10. Art. No.: CD003200, 2019. doi: 10.1002/14651858.CD003200.pub8

 

“the bastards don’t want to get better”

 

How can we fight this?

 

Everything they recommend is unproven or disproven. Opinion-based medicine yet again. They might as well have put blood letting in there. To do a 2023 update with this BS is a testament to the widespread regression of medicine in everything but advanced biomedical research. The rest is either stagnant or getting worse.

Weird bit about acknowledging and accepting the validity of the symptoms, which is a universal requirement, and is framed this way because we know what they mean.

Evidence-based medicine did that. The cult of "is there a RCT for that?" did that. Cochrane did much of that. In large part to allow psychosomatic nonsense to pass through, but the fault is in the entire system of EBM. It's functionally useless in the way it's implemented, even harmful. The only valid things found in EBM are independently validated with science, using rigorous laboratory experiments and based on a theoretical understanding. The pragmatic process of clinical trials is completely worthless, and has degraded medicine to the point where in some large areas, it does nothing but harm.

 

DId they REALLY use the exact word 'lamenting'????

This is weird because the phrase before that seems piecemeal with other bits ie like it's been 'cobbled' and isn't necessarily entirely intended to denigrate, even if it actually does. And the advice isn't at all helpful. 'aggressively managed with sleep hygeine' is perhaps the quickest way to finishing someone off in my book. But the person writing it doesn't seem to realise how harmful this is to the point of striking terror into someone with experience and not sounding like someone 'must really care to use that phrase'.

It depends on the day but when I read or hear (which comes with the context of the person in front of me) something like this it is often difficult to tell the difference between whether someone is being a deliberate bigot - a la the ideas of BPS and idea of certain organisations wanting to just ensure that those with ME/CFS are effectively 'badly treated by all' - or just stupid/deluded and they genuinely think they don't have bad intentions but can't be arsed to spend more than two secs of non-thinking to put down what are actually tropes but they soo stupid they think it is advice. Words like that are so ill-thought-through politically it is either someone believing they have the backing of power or are just so slapdash they don't notice what in an email they'd have spotted in an instant was a wind-up.

It smells of 'leakage' of absorption of the bigotry sold to every man and his dog by certain proponents who should be nowhere near any healthcare or profession with responsibilities or the vulnerable. Sadly these laypersons don't know that hatred is what they've been sold., and that there is no 'care' behind it just like calling any other minority-hating 'because we want to help them be better/less whingy'. It's so worrying the BPS con of concealing what in my opinion can be categorised as a form of abuse when you look at the totality of their 'how' (particularly when you consider coercion, consent and removal of voice/testimony re: harm involved with their attitude and propaganda) under the term 'help' and people never ever interrogating these terms and what it consists of. 'don't listen to them when they say it hurt them' should be a massive red flag.

I also think sadly we need to tackle the 'CBT-fake' 'coaching attitude' (which isn't what CBT was ever supposed to be - it was supposed to be about someone mapping what a condition is, not encouraging 'any old encouraging and motivating and coaching of the disabled' because they are stupid and just need jollying which is what certain individuals have turned it into aka bigotry-selling/making bigotry and coercion acceptable).

Yes, advice like someone who knows sh***-all about wheelchairs suggesting to the person who has been in a wheelchair all of their life very successfully 'have you tried just going at that kerb a bit faster'. And stupid and arrogant and bigoted like thinking that when said person looks at you for saying it and holds their temper but just thinks quielty 'what is wrong with you' that they must be the one that is intellectually deficient 'because their legs don't work like yours'. And thinking because they said it with enthusiasm, having spent two secs trying to think of something to say 'with positive intentions' that doesn't mean they shouldn't be red-faced and shocked at themselves for being so darn stupid once they heard it coming from their own mouths. This is what shocks me about the ME/CFS stuff, how most people who one second are normal and clever can - I'm guessing sadly from their profession it has been encouraged - inadvertently give out plain crap advice (even advice nothing to do with the codnition but the bigotry, without knowing the context) and the power differential is such you have to politely not say 'thanks for that, if I followed it then you'd screw me right up, why would you open your mouth on that serious topic without sitting and thinking so you knew all of it - who butts in when they know nothing like that?'

I do think that we shouldn't have to be polite and tapdance around plain tropes and bigotry. Or made up stuff that was always wrong and people deliberately dallying in changing it, just to be spiteful at 'being told'. But somehow we also need to try and gently without getting shackles up in the few 'goodies' start to show how they've been inadvertenyl led down the garden path and the habits they need to get out of. I think there is proper disability-training-related type stuff here that is specific to our area mainly because of the bigotry bred into it as advice but also the really poor predecessors who've been involved with it and the areas people look to grab 'ideas' from.

Sadly there are also those who trusted the person who told them what to write wasn't this. I don't know what you'd call them but it needs a different approach because they didn't know the type of numpties there were out there necessarily.

I also think - some days - that maybe if we all managed to get together and (here's the catch) be 'well enough' to nail the withering 'this is just plain disrepect, and clearly bodged and made-up, has anyone cared to check it isn't nonsense?' and provide notes of better language, and a long list of what is inappropriate advice and language, then maybe some of them might be embarrassed. Because I just think sometimes it is laziness. An illness noone really cares about in a lot of these organisations so they let someone just bodge any old thing together in half a day from old slides being tweaked.

I mean that's what BACME is isn't it, albeit they've put a lot more effort into their manifestos now trying to pretend their is science nonsense 'because they feel defensive' and 'don't like hearing they are wrong'. Sad isn't it that noone puts any effort into learning, or just getting a job in a more appropriate area for themselves. You know, doing the right thing. Like many of us did or do in our jobs. But if we can convince those around them with a 'don't be a bigot' campaign of some of the worst tropes and disability-related awful things in a way that makes it obviously laughable and awful to those who had no idea this was going on, then that might be the only way we start to find that 'norms' work in our favour and make them feel like they should be ashamed instead of trying to stick it on us?