BMJ article: How should we manage adults with persistent unexplained physical symptoms? - looks bad.

[trishrhymes]

Unfortunately stat-check is unlikely to pick up the fact that PACE is a 'pile of crap' to quote David Tuller.
As I understand it, all stat-check does is pick up anomalies in calculated p-values which may be little more than rounding errors, or the correct application of more sophisticated corrections to p-values. As some have said, it's little more than the statistical equivalent of a spell checker.

I doubt it would show up anything in PACE, or if it does show anything, it won't be the fundamental flaws in the methodology.

Stat-check cannot reach the heart of the problem:
- inherent bias in un-blinded psychological, questionnaire based 'research',
- using the wrong cohort of patients (fatigue, not ME)
- outcome switching,
etc.

all of which make PACE unreliable, indeed fraudulent, in a much more fundamental way.

 

[MEisnotMUPS]

Oh god, the Dutch are at it again....When does this stop....
This is why we need your help people......ME is not MUS/MUPS.....
https://petities.nl/petitions/me-is...sie-en-houd-u-aan-de-adviesopdracht?locale=en

Please don't let the BPS proponents get their way. And we will be stuck with the rethoric of the BPS model (a hypothesis!) for ever......It makes me so sad. We need help and real care and understanding of the nature of this disease. But the Wessely-school UK/Dutch following are relentless and getting all the funding...that should go to biomedical research.

We have Dutch PACE colleagues/BPS proponents on the Dutch Health Council writing advisory report on ME as we speak. Please help us get to 7000 signatures (a little over 700 still needed).

https://petities.nl/petitions/me-is...sie-en-houd-u-aan-de-adviesopdracht?locale=en

 

[mango]

For some reason I read that as "Enhanced care by general practitioners comprises retribution" - as in "I'll teach you to come in here wasting my time pretending to be ill - take some of my ´"enhanced care", damn you!"

Well, in this context it's kind of difficult not to associate the expression "enhanced care" with the euphemism "enhanced interrogation" (systematic torture)...

 

[Woolie]

"Enhanced care by general practitioners comprises retribution"

!

 

[Woolie]

We have Dutch PACE colleagues/BPS proponents on the Dutch Health Council writing advisory report on ME as we speak. Please help us get to 7000 signatures (a little over 700 still needed).

Maybe make this into a new thread, so everyone can see it?

I agree, ME is not MUPS. But MUPS is not MUPS either. I mean, its not the Psychological thing they think it is. We don't want to leave anyone out in the cold, being psychologised instead of treated.

 

[Mohawk1995]

It is not surprising that this thread is the result of a combination of several factors that when combined lead to very poor care for those with ME/CFS:

• Government "Controlled" healthcare focused on minimizing reimbursement for care. Not just in countries with socialized medicine although that is a strong influence. Even in the US, the healthcare is heavily influenced (controlled) by the government. Whether you view on this is good or bad, it comes down to cost minimizing by people for whom providing healthcare is not their chief motive or expertise.
• A reliance on "Best Practice" or "Research supported" medicine. You would think this would be of benefit to those suffering from ME/CFS, but in general it is not. Most Best Practices or Research are "averages or averages". The so called "Population Health" rules are meant for the majority of the population, not for the minority populations that fall outside of the "normal" range.
• The complexity in makeup of ME/CFS. It is a highly complex and not well defined disorder. Often labeled different things by different people or countries. Pathophsiology is just not all that clear yet.
• That people who suffer from ME/CFS often develop Emotional issues or Psychological "problems" AS A RESULT of living with this disease. Whenever someone's life is completely taken from them, it is right and expected for them to struggle emotionally with coping with this "new life" they are confronted with. Not only that the devastating effects of living with this for months and years places an extremely heavy burden on the patient and those who care for them. So it is easy to "diagnose" someone as having psychological issues when it would be very abnormal for them to not have any.
• The investment in research aimed at ME/CFS is atrocious! A disease that impacts as many lives in the way this does and yet have relatively non-existent funds compared to HIV/AIDS is literally insane and driven almost exclusively by political factions to the detriment of others.

Not attempting to give anyone answers with this thread, but places to start should include:

• Somehow returning Medicine and the practice of it to the people who actually provide the care. This should be particularly true with diseases like ME/CFS. This would definitely require a model of accountability, but perhaps that should be done most by those who suffer with the disease and those who care for them. This would also reduce the "reimbursement first and then treatment second" mindset that is pervasive in society today.
• Research is great, but it needs to be focused on providing answers to what is going on in ME/CFS at the molecular, cellular, metabolic and neuro-physiological level. Coupling that with Clinical Research in the actual treatment and outcomes of those treatments should be done more empirically and less so in a RCT model. I know purists would argue against this, but if it were all transparent and open it would provide faster results and get the most effective treatments in the hands of direct care providers the fastest.
• An acknowledgement of the devastating emotional and psychological impact this disease has on those who suffer with it and their immediate supporters/caregivers. Not to blame the patient or tell them they just need to think or behave differently, but to support them getting the care for their emotional, psychological and even spiritual well being that they deserve. This is not a cognitive or psychologically derived disorder.
• Lastly, the actual dollars needed to perform the research and even the treatment necessary once more effective treatments are identified should be increased in accordance to the current personal and societal burden this disease has. Do I think that is should be funded at a higher rate than HIV/AIDs? Not sure on that, but we could sure use $2-3 billion of the $29 billion dedicated in the US alone to that currently for a far more manageable disease in comparison to ME/CFS.

I do think the work that Jennifer Brea is doing with her TED talk and the UNREST movie is opening the eyes of the world to the millions of people who suffer with this. I hope and pray it continues to do so

 

[chipmunk1]

I thought if you didn't return after 6 months a quack considers you cured.



For some reason I read that as "Enhanced care by general practitioners comprises retribution" - as in "I'll teach you to come in here wasting my time pretending to be ill - take some of my ´"enhanced care", damn you!"

cured = healthcare seeking behaviour stopped

 

[Large Donner]

Ah, good old passing the buck.

They talk about excessive healthcare utilisation.

Where exactly are all these patients with "MUS" that keep visiting doctors? Do they really exist on a returning basis? Or is this an admission that large numbers of people, on a singular basis when using primary services, the GP fails to give them an instant diagnosis?

I just don't know anyone with any label like ME etc that even bothers going to the GP or any other doc for that matter, unless they go private. I don't even go for other stuff because of the incompetence of the health system.

I would really like to see some proof that people with a "diagnosis of MUS" even bother to go back to the doctor any more than anyone else.

This smells a bit to me like "we only have ten minutes with each patient and people keep coming in with symptoms that I cannot diagnose in ten minutes with no tests so lets not bother unless they may drop dead soon".

Then someone comes along and does a tick box analysis of how many GP appointments are "taken up with MUS".

Is this like the equivalent of the Oxford criteria versus the ICC criteria in the sense that "MUS" is every single appointment that a doctor hasn't given an instant diagnosis on or even bothered to follow up to see if the patient has received a real diagnosis.

Do they even separate currently medically unexplained from the above category?

 

[trishrhymes]

It would be interesting to know how the visit being categorised as MUS is determined. For example, these two questions would elicit wildly different data:

1. Were you able to diagnose the patient's illness at this visit?

2. Does this patient have a set of symptoms that have been ongoing for more than 6 months, that you have carried out a thorough investigation into possible causes including referrals to relevant specialists?

 

[Large Donner]

It would be interesting to know how the visit being categorised as MUS is determined. For example, these two questions would elicit wildly different data:
1. Were you able to diagnose the patient's illness at this visit?
2. Does this patient have a set of symptoms that have been ongoing for more than 6 months, that you have carried out a thorough investigation into possible causes including referrals to relevant specialists?

Ye thats what i meant to say.

 

[Valentijn]

I just don't know anyone with any label like ME etc that even bothers going to the GP or any other doc for that matter, unless they go private. I don't even go for other stuff because of the incompetence of the health system.

Currently I visit my GP weekly at her request - due to being newly diagnosed with Diabetes and meds not working yet

Prior to that, I hadn't gone to see my GP for several years. And I wouldn't be going now if I didn't need to for the Diabetes. It's a pain in the ass!

 

[Large Donner]

Currently I visit my GP weekly at her request - due to being newly diagnosed with Diabetes and meds not working yet

I'm assuming that prior to being newly diagnosed with diabetes you had medically unexplained diabetes like symptoms except they didn't bother with the word diabetes and just listed you somewhere as MUS.

Prior to that, I hadn't gone to see my GP for several years. And I wouldn't be going now if I didn't need to for the Diabetes. It's a pain in the ass!

Ah ha diabetes doesnt give you a pain in the ass, that must be a MUS.

The only reason I would go to my GP now would be if I fell pregnant and even then it would only be because I am a man.

 

[trishrhymes]

The only reason I would go to my GP now would be if I fell pregnant and even then it would only be because I am a man.

 

[slysaint]

The only reason I would go to my GP now would be if I fell pregnant and even then it would only be because I am a man

Be more lucrative to contact the Sun................the doctor would more likely diagnose indigestion or MUS

 

[alex3619]

Does this patient have a set of symptoms that have been ongoing for more than 6 months, that you have carried out a thorough investigation into possible causes including referrals to relevant specialists?

Rare and difficult diseases, as well as any that are yet to be identified or for which tests still do not exist, can take decades to be identified.

Its why I find the assertion that evidence shows that rediagnosis for psychosomatic disorders only occurs at a 4% rate is laughable. This refers to research done at a hospital where they don't do further tests on these patients, and only has a follow-up period of a year. What nonsense. Its deeply implicit that testing is adequate, and doctors are competent to diagnose these problems, whereas neither is an accurate assumption. I have to ask the question as to what the rediagnosis rate would be if adequate testing were done and doctors were following up on the patient for the 20+ years it might take.

 

[Chrisb]

The only reason I would go to my GP now would be if I fell pregnant and even then it would only be because I am a man.

There would be no point going even then as it would be clear evidence of a wandering womb.

 

[Molly98]

There would be no point going even then as it would be clear evidence of a wandering womb.

 

[trishrhymes]

Rare and difficult diseases, as well as any that are yet to be identified or for which tests still do not exist, can take decades to be identified.

Its why I find the assertion that evidence shows that rediagnosis for psychosomatic disorders only occurs at a 4% rate is laughable. This refers to research done at a hospital where they don't do further tests on these patients, and only has a follow-up period of a year. What nonsense. Its deeply implicit that testing is adequate, and doctors are competent to diagnose these problems, whereas neither is an accurate assumption. I have to ask the question as to what the rediagnosis rate would be if adequate testing were done and doctors were following up on the patient for the 20+ years it might take.

I completely agree, @alex3619 . By definition, as far as I am concerned, all MUS are simply an admission of ignorance.

I suggested that different statistics would be found if MUS were diagnosed 1. at the first appointment, or 2. after comprehensive testing.

I should probably have added that this latter category is, by definition, simply a smaller group of patients who have still to be diagnosed. It should not be an end point of efforts to find a cause. It should not be used as the basis of psychiatric diagnosis.

 

[alex3619]

The way I think of it is that treating MUS as psychiatric is of the same flavour as treating UFOs as definitive flying saucers. You know the phenomenon is real, but you lack proof of a particular interpretation ... then you make that interpretation anyway.

 

[Large Donner]

The way I think of it is that treating MUS as psychiatric is of the same flavour as treating UFOs as definitive flying saucers. You know the phenomenon is real, but you lack proof of a particular interpretation ... then you make that interpretation anyway.

Hey, if its good enough for the Lancet.