Future healthcare for ...the common pain disorder ‘fibromyalgia...’ – fundamental changes based on the discovery of an immune cause, 2025, Goebel

[Hutan]

Future healthcare for patients with the common pain disorder ‘fibromyalgia syndrome’ – fundamental changes based on the discovery of an immune cause

Author: Andreas Goebel

Recent laboratory advances have allowed re-conceptualising fibromyalgia syndrome, a common, severe chronic widespread pain condition, as an immune-mediated disease. This article summarises key findings and their implications for preventative strategies and future healthcare advances and their costs.


Link Open Access | Future Healthcare Journal

 

[Hutan]

There is no tissue destruction, no inflammation, even after decades of suffering.

Clearly then, we thought, it is the brain where pain and the associated symptoms originate. This idea appeared consistent with results from brain function studies (fMRI) showing that pain-related regions in FMS patients’ brains show stronger than normal activation in response to standard stimulation of their skin.1 As our patients are often distressed, we reasoned that in the absence of any remotely convincing peripheral cause, there is only the distressed brain, perhaps on the background of genetic vulnerability, that can produce such devastating symptoms.

Patients, though, can take the idea of a simple absence of peripheral causes as an insult, adding to their injury of having chronic disease. ‘Do you think I am making this up then?. ‘No.’ ‘But you are saying that it is all in my brain?’. ‘Yes, but your pain is real.’ ‘I feel it so clearly in my muscles – how can it be in my brain?’. ‘We don’t fully understand how this works – it is your brain’s software gone wrong rather than the hardware, this has happened due to a complex interplay of factors’ … and so on …

Turns out that they were right. We’ve told them the wrong story all along, we have conveyed a well-meaning, nevertheless wholly inaccurate account what is going on.

Setting aside whether Goebel has the answer to fibromyalgia or not, (and we've discussed that more on the threads about his papers here and here) it's interesting to look at how Therese Barnes, the editor of the Special Issue reacted to the possibility of a biological cause and an (expensive) biological treatment for potentially a very significant number of people.

Theresa Barnes notes there are alternative theories and that the cost implications of treatment strategies if Goebel is right may be high.

The cause of these symptoms is highly complex and currently incompletely understood. They involve an interplay of biopsychosocial mechanisms. Recent advances in mechanistic thinking are explored by Andreas Goebel.4 His findings bring fresh therapeutic hope to patients with fibromyalgia, although the cost implications to the NHS of the potential treatment strategies may be high. We watch potential developments with great interest. It should be acknowledged that there are other theories about potential mechanisms and treatment strategies for symptom-based disorders in an area which is fast evolving and not without controversy. This is an area which requires significant research funding to address the considerable unmet clinical need.

She does note that this is an area that requires significant research funding.

Despite the uncertainty and the possibility that fibromyalgia (and other symptom-based disorders) are a medical problem with a medical treatment, Barnes feels confident in stressing that

Over-medicalisation and over-diagnosis are detrimental to patients.

She goes on to promote holistic multidisciplinary personalised services:

Services for symptom-based disorders should be focused on holistic and personalised management of a patient’s symptoms and distress, with the aim of improving function. They should be supported by a multidisciplinary team including peer support, social prescribing, social and employment support, and in-reach from specialist services including psychology to facilitate investigation of red flag symptoms or for escalation of treatment where required.

 

[Sean]

Over-medicalisation and over-diagnosis are detrimental to patients.​

And over-psychologising isn't?

The problem is inaccurate diagnosis and inappropriate treatment, whether medical or psychological.

 

[bobbler]

Setting aside whether Goebel has the answer to fibromyalgia or not, (and we've discussed that more on the threads about his papers here and here) it's interesting to look at how Therese Barnes, the editor of the Special Issue reacted to the possibility of a biological cause and an (expensive) biological treatment for potentially a very significant number of people.

Theresa Barnes notes there are alternative theories and that the cost implications of treatment strategies if Goebel is right may be high.

She does note that this is an area that requires significant research funding.

Despite the uncertainty and the possibility that fibromyalgia (and other symptom-based disorders) are a medical problem with a medical treatment, Barnes feels confident in stressing that


She goes on to promote holistic multidisciplinary personalised services:

Wow

About as close as we get to such types showing their hand on what is driving what they are saying/doing/pushing for certain groups

A few decades ago I fell for the bring coerced into saying I didn’t want to take money needed by cancer patients type things so that must have been what was being pushed at me by healthcare

Only to years later realise a well colleague earning as much as me but with a partner to share costs waltzed into a GP and got sun cream and that others didn’t have their prescriptions deliberately messed either so that each month I’d have to do phone calls and an in person appointment taking a month to get an item back on (none of which were unusual or me related things but stuff standard for everyone else they never had messed with)

And that they’d had referrals on the nhs in their lifetime and so on

Whilst I couldn’t even shop or get my hair done outside work.

I’m now used up having done the work for colleagues that they didn’t do because they had lives and could say no and my body is trashed

And yet people like this are still selling what I had so long of living under which is being told I had to realise how little I deserved and was worth and repeat it back to them

And I realise that likely the people pushing this and those parroting it are the same types who I had to pick up the slack work wise for to make the world go round and make sure people weren’t let down , not as their awful attitude of deluded superior (they weren’t as good as me either) to get heir own way would infer

And I’ve realised it’s just the worst kind of bigotry and deliberate life destroying coercion. And I say life not in just health but these rolls write and do things that make sure it impacts all aspects.

They aren’t doing anything ‘good’ or it’s because of some mission where they know what it would cost or how much it helps.

They know anything on cost effectiveness divided by zero means asymptotic cost effectiveness but happily lie to strait-jacket is and it can only be for their own advantage I’m afraid and to harm and be unkind with such untruths that ‘something helps’ when it doesn’t in order to take a survival route (not living or even coping, just surviving) away m

So I find it immoral and illogical and such people very hard to read with their self-delusion and plain incitement with manifestos based on non facts

She’s using cost as a dog whistle in order to switch and bait their own most expensive solution of high staffing bs therapies that harm and leave us not just unproductive but without independence for our lives. When for the less than a pound per head of research she had no clue that the cure isn’t cheaper than the sun cream people like her might be wangling out of the nhs for free even when they can afford it but tell themselves whatever story - that can’t afford phrase is something that’s fascinated me to watch in other people as I grew up using it only literally only to be amazed as I hit middle age to realise and confirm so many convinced themselves of using that term differently

No country needs people like that anywhere near any service unless their aims and objectives aren’t the good of the country and taxpayers but more political and less straightforward than that

 

[bobbler]

Over-medicalisation and over-diagnosis are detrimental to patients.​

And over-psychologising isn't?

The problem is inaccurate diagnosis and inappropriate treatment, whether medical or psychological.

The scary thing is when you realise it might be the case that such people are on the taxpayers payroll at a very high level ie billing the hours they spend just spouting stuff like this - I don’t know what else she might offer for any salary she has.


I always thought some of this was about the classic people wanting to change their jobs to a cushy number but that started with thinking if those in high pressured of physical jobs wanting to be giving out homework type things. It’s now struck me some might only actually be badmouthing good humans and doing very little science or medicine nevermind anything people would think of as ‘being a doctor’ these days and yet be on some of the highest salaries that could fund what how many who could actually be researching or treating people instead?

How do such jobs work?

 

[Utsikt]

Setting aside whether Goebel has the answer to fibromyalgia or not, (and we've discussed that more on the threads about his papers here and here)

I think those two links go to the same thread.

 

[richie]

Over-medicalisation and over-diagnosis are detrimental to patients.​

And over-psychologising isn't?

The problem is inaccurate diagnosis and inappropriate treatment, whether medical or psychological.

I take your point but psychology is not ipso facto not medical, as BPS/Wezza etc repeatedly (and correctly) assert@ nor are functional disorders non medical. So a functional and/or psychological diagnosis is still a medical diagnosis and could easily therefore be an overdiagnosis or a wrong diagnosis. Petard and hoist comes to mind.

 

[richie]

Future healthcare for patients with the common pain disorder ‘fibromyalgia syndrome’ – fundamental changes based on the discovery of an immune cause

Author: Andreas Goebel

Recent laboratory advances have allowed re-conceptualising fibromyalgia syndrome, a common, severe chronic widespread pain condition, as an immune-mediated disease. This article summarises key findings and their implications for preventative strategies and future healthcare advances and their costs.


Link Open Access | Future Healthcare Journal

Very interesting. Meanwhile sarcoidosis patients with an established and recognised immune condition accompanied very often by fatigue and pain are getting FM diagnoses on the "symptom list" basis. Infact it may not be a bad diagnosis as the immune disruptions may be similar to those found in FM , but it should not be presumed that they are the same , nor that they cannot cause widespread myalgia on an immune basis which is not the same as FM. The controversial FM therapy guaifenesin has an elaborate theory about mitochondrial calcium, salycilate blocking and all sorts, was deemed under trial to be no better than placebo, but interestingly eotaxin , ifn gamma (or maybe TN=F alpha) and MCAP were all found to be raised under guai therapy. Something going on.....

 

[rvallee]

It's things like this that make it clear they will never fix things on their own. That even when they're wrong, even when they admit they got it wrong and we got it right, they're still right and refuse to change anything.

As our patients are often distressed, we reasoned that in the absence of any remotely convincing peripheral cause

There was no reasoning involved. None. You explicitly confused, distorted, illness as distress, which was constantly pointed out and dismissed. You were just wrong and made all the wrong decisions and millions of lives were and will continue to be destroyed for an insane belief system.

We’ve told them the wrong story all along, we have conveyed a well-meaning, nevertheless wholly inaccurate account what is going on.

It's telling stories that is wrong in the first place. This was always just a bunch of nonsense, and that is never "well-meaning". This will all need to be punished severely. Andrew Wakefield was always certain he meant well. It doesn't mean anything, this is not how any of this works, it's explicitly how professionals don't work. This isn't a slippery slope, it's a straight chute.

And still they stick with every wrong decision made that derives from the original sin. Absurd. This ideology needs to be smashed into tiny pieces and thrown down a volcano and everything that derives from it erased from existence with extreme prejudice. That, or millions of lives will continue to be destroyed for their egos. We all know which choice they will always make.

 

[V.R.T.]

This ideology needs to be smashed into tiny pieces and thrown down a volcano and everything that derives from it erased from existence with extreme prejudice.

Amen.

 

[rvallee]

I take your point but psychology is not ipso facto not medical, as BPS/Wezza etc repeatedly (and correctly) assert@ nor are functional disorders non medical. So a functional and/or psychological diagnosis is still a medical diagnosis and could easily therefore be an overdiagnosis or a wrong diagnosis. Petard and hoist comes to mind.

Ah, no one believes that. It's explicitly asserted in the literature that this is also a convenient lie. No one who promotes psychosomatic ideology or FND in particular believes it's a medical diagnosis. They mean psychological and pretending otherwise is part of the Big Lie.

When they say medical they mean biomedical with proven pathology, and even psychiatry is mostly excluded from that. The lies have to stop entirely, the practice of lying has to be rooted out of medicine entirely as otherwise it gets systematically abused. This means countering any and all lies head on, never allowing a single one to pass through.

 

[V.R.T.]

FMS clinically appears frequently triggered by psychologically highly stressful events, perhaps particularly in genetically and/or otherwise vulnerable people.15 Alternative triggers might include infectious events16; some patients do not identify any trigger. How experience of severe distress may translate into the production of abnormal IgG antibodies requires further study.

So Goebel has discovered evidence that disproves the myth, written an essay debunking it and in that essay is for some reason folding elements of the myth into the real science?

 

[Utsikt]

And still they stick with every wrong decision made that derives from the original sin. Absurd. This ideology needs to be smashed into tiny pieces and thrown down a volcano and everything that derives from it erased from existence with extreme prejudice. That, or millions of lives will continue to be destroyed for their egos. We all know which choice they will always make.

I’ve stopped believing it’s possible to get these people to change their minds with the means that can reasonably be used. A few people that get sick themselves change their minds, and even fewer of the people that see loved ones get sick, but that’s not something we can rely on.

No matter what evidence we provide, they will find a way to make it fit with their worldview and avoid realising their flawed assumptions. When they are told that people die from malnutrition or suicide, that just bolsters their belief in how powerful the psychosocial factors can be.

The only thing we can succeed at is making them go somewhere else. That will only happen when there are reliable treatments or cures that shrink their markets and push them to the fringes.

There is no use in engaging in rational discussions with them because they have abandoned rationality. We still have to argue against their assertions made towards others to try to limit their influence, but trying to engage with them directly will only give them a perceived credibility that they do not deserve, and waste our time and energy.

 

[Utsikt]

So Goebel has discovered evidence that disproves the myth, written an essay debunking it and in that essay is for some reason folding elements of the myth into the real science?

He still appears to believe that distressing experiences can cause FM, just that it happens through mind influencing immune system, and the immune system getting stuck afterwards and keeps influencing the mind even when the distressing events have resolved.

So he at least acknowledges that treating the mind might not fix FM, but still wants to attempt to prevent «toxic distress» to prevent FM from starting in the first place.

Although our patients may be clinically distressed, it appears now quite unlikely that the FMS pain itself originates in the brain. Rather, I speculate that its cause may involve a circuit by which the brain experiencing distress alters the immune system, which then changes the function of certain cell types. Affected cells in the body, in turn alter the electrical function of peripheral sensory nerves and perhaps also produce mediators which can directly work on the brain via humoral pathways. In these vulnerable people, not a small group, hence the body ends up embodying the experienced distress – it is the body which now inflicts misery upon the brain, triggered originally by signals from the brain upon exposure to outside events.

Many of my patients tell me that they are now safe, that they have left their abusive partner, that they are financially stable, that they have found a value-creating job, that they have successfully attended a comprehensive pain management programme, yet their FMS pain continues. It appears that once set in motion, the pathogenic FMS immune process is not easily reversed with available methods.
This tells us i) that non-destructive immune changes can profoundly sculpt the state of our mind, likely at least in part via peripheral action – the mind is not as separate an affair as Descartes (1596–1650) had held17; ii) that the potential value of preventing toxic distress from affecting any fellow citizen may be enormous; preventative measures should help us avoid massive costs from symptom-based disorders – in FMS we may be on track to identify a good scientific explanation for this often-cited truth in healthcare.

 

[richie]

Ah, no one believes that. It's explicitly asserted in the literature that this is also a convenient lie. No one who promotes psychosomatic ideology or FND in particular believes it's a medical diagnosis. They mean psychological and pretending otherwise is part of the Big Lie.

When they say medical they mean biomedical with proven pathology, and even psychiatry is mostly excluded from that. The lies have to stop entirely, the practice of lying has to be rooted out of medicine entirely as otherwise it gets systematically abused. This means countering any and all lies head on, never allowing a single one to pass through.

But any phrase will do in that world and it is the "Royal College of Psychological Medicine" and to be fair to the FNDer they are looking at brain waves nowadays.
When I say medical I mean psychological, functional, biomedical, when some say medical they exclude psychological and FND, when "they" BPS etc. say medical they mean whatever is convenient to "changing the culture", "redefining health" avoiding "overdiagnosis" etc.
I think finding their own inconsistencies is useful because truth is not necessarily their main interest. They are Engels people.