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NICE : "Do not do" recommendations for (not) treating ME/CFS

barbc56

Senior Member
Messages
3,657
Aaargh. :bang-head::bang-head::bang-head:

I think we can all say we have all at one time or another "shared your fog" :lol:

Barb

ETA
The above being a prime example of brain fog.

I'm not sure evryone will get the phrase "I feel your......". Is this just an American phrase? I can't even remember it's origins. (runs strolls to computer to do a search on Google.):)
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I'd prefer if they put a 'we don't know yet but we're working on it' under the diagnosis, causes and treatment sections, I think many would prefer that to the spouting of this sort of thing which everyone knows is utter rubbish anyway...

You'd have thought that following many other diseases such as MS and many more being treated like this prior to a better understanding of the disease, authorities would learn that it's acceptable to put a 'we don't know' when you don't. I guess that the powers that be want to give the impression that they are all knowing omnipotent beings when in truth they just don't want to appear empty handed.

I completely agree. The frequent failure of bureaucracy, academic and clinical medicine to admit "I don't know" is responsible for serious problems. I hope to write a lot about this in my book, which is on complete hold at the moment as my cognitive capacity has declined to circa 2006 levels. Without taking into account uncertainty, and especially the unknown, the bureaucratic need for certainty creates severe obstacles for progress.
 

NK17

Senior Member
Messages
592
So if you're in the UK, you have to do everything possible under the sun NOT to get ME or CFS in your record as that's a sign for any UK doc to ignore any symptoms you have. If I were there, I'd be fighting tooth and nail to get "ME/CFS" off my record.

So if you have OI symptoms, you must not have ME/CFS, since PWME can't have OI, apparently. Take ME/CFS off your record. If you have neurological symptoms, you can't have ME/CFS according them them, right? Take ME/CFS off your record.

It's shocking that doctors are told not to test people with known symptoms simply because a certain word (acronym) is written in their file. The lack of logic is appalling.
@SOC I'm afraid you can't reason with ignorant, inhumane bureaucrats/A*/ H$@&*, can you?

By the way my ME/CFS doctor here in the US avoids writing in his patients files or using the code for CFS, he is that smart ;).

Too bad I have a wastebasket list of diagnoses in my file at the major university hospital that is the only one approved by my very restrictive new insurance policy.

Shall I try and eventually fight to get it removed?!
 
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SOC

Senior Member
Messages
7,849
@SOC
Shall I try and eventually fight to get it removed?!

Why not? ;) It's on my bucket list to try to get depression out of my record. We'll probably be fighting hopeless battles, but heck, what else do we have to do with our time and energy? :rolleyes:
 

Mij

Messages
2,353
I'd prefer if they put a 'we don't know yet but we're working on it' under the diagnosis, causes and treatment sections, I think many would prefer that to the spouting of this sort of thing which everyone knows is utter rubbish anyway...

You'd have thought that following many other diseases such as MS and many more being treated like this prior to a better understanding of the disease, authorities would learn that it's acceptable to put a 'we don't know' when you don't. I guess that the powers that be want to give the impression that they are all knowing omnipotent beings when in truth they just don't want to appear empty handed.

I respected every single doctor I saw in the last 23yrs who told me sh/e didn't know enough about this illness to help me but ruled out all the obvious things.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
No scientist is scared or frightened to admit they were wrong, science has never claimed to be anything other than "the best available knowledge so far".
If new, better knowledge comes along - the old has to go. Science is a process.

This is a very important basic tenet of science... one the psychiatrists don't recognise.
 

NK17

Senior Member
Messages
592
I respected every single doctor I saw in the last 23yrs who told me sh/e didn't know enough about this illness to help me but ruled out all the obvious things.
I also respect the few doctors I saw in the last 3yrs, at least the ones who are making sure that I don't have or don't develop another serious condition.

What makes me mad is the status quo that we as PWME have to go up "against", in other words how are we going to get better when there are no doctors, or close to none (about 12 in the 50 United States) that is knowledgeable enough to try to help us?

That's why I remain vigilant and skeptic towards any doctor and many of the so called diagnoses, such as fibromyalgia, since IMHO, in many cases, they are just a label for a symptom, albeit an important and very debilitating one, that has no well proven scientific background.

My heroes are the Dr. Montoyas and the Prof. Davis (both @ Stanford), because they are brave enough to say that the medical/scientific community will have to formally apologize for what they haven't done for us and they emphasize the cardinal fact that no real clinician/researcher should be afraid, at this time, to learn, listen, study and practice in the ME/CFS field.
 

NK17

Senior Member
Messages
592
No scientist is scared or frightened to admit they were wrong, science has never claimed to be anything other than "the best available knowledge so far".
If new, better knowledge comes along - the old has to go. Science is a process.

This is a very important basic tenet of science... one the psychiatrists don't recognise.
I totally and completely agree with you @peggy-sue.

Real Science is self correcting, the rest is pseudoscience and with that we'll go nowhere!
 

biophile

Places I'd rather be.
Messages
8,977
Science should be self-correcting, but egos and ideologies are usually not self-correcting without humiliating smackdowns.

Anyway, going back to the 'do not do' recommendations. Most of it is about testing and medications, but:

CG53 : [advice] : Advice to undertake unsupervised, or unstructured, vigorous exercise (such as simply go to the gym or exercise more) should not be offered to people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) because this may worsen symptoms.

Good.

CG53 [prolonged or complete rest or extended periods of daytime rest] : Strategies for managing chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) should not include prolonged or complete rest or extended periods of daytime rest in response to a slight increase in symptoms.

Notice how they state "slight" increase in symptoms, which does not sound too bad. However, for people who already need prolonged rest due to symptoms, a slight increase in symptoms can have a significant impact which requires more rest.

CG53 [imposed rigid schedule of activity and rest] : Strategies for managing chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) should not include an imposed rigid schedule of activity and rest.

For some of us, CBT and GET have imposed rigid schedules of activity and rest, yet NICE recommend CBT/GET. An example of the 'flexibility' can be found in the PACE Trial manuals, where exercises must not cause a significant decline in function (which for most of us means not doing anymore than we already are) and if symptoms arise from an increase in activity then try to tolerate them for a week or so before giving them up (which for most of us in unwise).
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
It is bizarre that they suggest no MAO inhibitors when the evidence base suggests the opposite - that SSRIs are ineffective in depression in CFS and MAOIs are the most effective. Likewise, there is also evidence that suggests that corticosteroids have some modest effectiveness at the right dosage (not too high!).

So why aren't their recommendations evidence-based?
 

Sean

Senior Member
Messages
7,378
No scientist is scared or frightened to admit they were wrong, science has never claimed to be anything other than "the best available knowledge so far".
If new, better knowledge comes along - the old has to go. Science is a process.

This is a very important basic tenet of science... one the psychiatrists don't recognise.

As they say, all knowledge is tentative.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
Snowleopard makes a point I want to make - why no MAOs? Why no steroids?
It's not as if I want them, or think I need them - I just want to know why they are "contraindicated" in "CFS/ME".
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
As they say, all knowledge is tentative.

That is the whole issue that arose out of correcting the mistakes of nineteenth century science, which was hung up on laws of nature. Psychiatry often uses nineteenth century scientific methodology and thinking. Its hung up on empiracism, the collection of facts to support their conclusions, while permitting and ignoring contrary evidence.
 

A.B.

Senior Member
Messages
3,780
Its hung up on empiracism

I must object to this choice of words. Empiricism simply means observation of reality and is pretty important when it comes to deciding whether a hypothesis is correct or not. In the context of CFS/ME, psychiatry is failing to observe the reality of CFS/ME properly. Their view of CFS/ME fails the reality check but they're unable to admit it.
 
Messages
81
Looking back my last GP, who has unfortunately moved away, removed CFS from my record (stating it had been excluded), I wonder whether he was doing so to ensure I could get further treatment and testing going forwards. He was very critical of the diagnosis of ME/CFS and agreed with me that it was an unhelpful diagnosis for both the patient and the physician, basically saying that we don't know what is going on but giving me the diagnosis would be worse than not.

My doctor also employs this tactic. He describes my condition as long-standing fatigue of uncertain origin (along with other symptoms), therefore he is compelled to investigate.