'Independent' PACE TSC member speaks on MUS at British Infection Association

[Esther12]

Not really important, but I just noticed this. The 'independent' oversight of the PACE trial seemed to come almost entirely from those sharing the PI's ideological positions, which may explain why it was so careless.

BRITISH INFECTION ASSOCIATION
Session 3:
Dr Meirion Llewellyn
Consultant in Infectious Diseases
Royal Gwent Hospital

Dr Meirion Llewelyn BSc FRCP PhD qualified in Medicine in Cardiff and trained at Hammersmith and St Thomas’ Hospitals in London. He was registrar in Infectious Diseases at Addenbrooke’s hospital Cambridge, then MRC fellow at the Laboratory of Molecular Biology and Harrison-Watson Student at Clare College Cambridge. He returned to Cardiff as Senior Registrar in Infectious Diseases and is Consultant Physician in Medicine/Infectious Diseases at The Royal Gwent Hospital. Recent research interests have included diagnostic methods for chronic Q Fever and treatment approaches to medically unexplained syndromes.
Difficult symptoms in the ID clinic Medically unexplained symptoms (MUS) are troubling physical symptoms for which no organic pathology can be found. These unexplained symptoms are very common in all branches of medicine, forming nearly one third of cases in hospital outpatient clinics. Although these are epidemiologically related to depression and anxiety, they do not appear to represent a primary mood disorder. Because infectious mononucleosis can be followed by either excessive sleep or insomnia associated with muscle and joint pain, (with psychomotor retardation and poor concentration in both), many patients with medically unexplained symptoms are referred to Infectious Diseases Clinics. The vast majority of these will have no infectious aetiology for their problem and present with the typical symptoms of neurasthenia, first described in 1869. The symptoms of neurasthenia include exhaustion, widespread musculoskeletal pain, impairment of cognitive function, post exertional malaise and unrefreshing sleep. The list of symptoms often approaches 30 and they are often written in a list, a syndrome called by Charcot ‘
la maladie du petit papier’.

A minority of patients with neurasthenic symptoms also have disease convictions and these have included entities such as ‘Chronic Candidal infection’, ‘seronegative Lyme disease’ and ‘multiple chemical sensitivity’.

Understanding the now forgotten symptoms of neurasthenia can shed light on the vast majority of patients with medically unexplained symptoms in the ID Clinic, and illustrate that persistence of symptoms now delineated as chronic fatigue syndrome or fibromyalgia throughout history.

https://www.britishinfection.org/files/1515/0093/2785/BIA_-_May_2017_-_Abstract_Book.pdf

 

[Rick Sanchez]

What amazed me when I read about Functional Somatic Disorders, Medically Unexplained Physical Symptoms and Bodily Distress Syndrome was that even White (yes our White), disagreed with Wessley over the Functional Somatic Disorders. It was an odd feeling agreeing with some of White's arguments.

http://bjp.rcpsych.org/content/bjprcpsych/185/2/95.full.pdf

I was also intrigued by the fact that the psychiatrists behind the different umbrella syndromes have been pushing extremely hard for their ideas / research recently. Especially in The UK, Netherlands and Denmark, which make out the holy trinity of psycho-nonsense. Do they not realise that they have a huge explanation problem by including ME/CFS in these umbrella syndromes, when it is absolutely clear that ME/CFS is a separate disease entity, and that all future research will only help make this abundantly clear? Or maybe they just do not care. Psychiatrists have a history of not facing any consequences whatsoever when being proven wrong.

 

[Sean]

Medically unexplained symptoms (MUS) are troubling physical symptoms for which no organic pathology can be found.

The highly problematic assumption here being that investigations for organic pathology have been safely adequate, and there is no reasonable possibility of as yet unidentified disease processes underlying the symptom profile.

Psychiatry has made this mistake before, many times. Indeed, it is arguably one of the most defining characteristics of psychiatry.

Understanding the now forgotten symptoms of neurasthenia can shed light on the vast majority of patients with medically unexplained symptoms in the ID Clinic, and illustrate that persistence of symptoms now delineated as chronic fatigue syndrome or fibromyalgia throughout history.

Because we all know that the first description and interpretation of a phenomena is always the best.

This is nothing more than the Golden Age fallacy.

 

[Wonko]

arguably?

 

[Sean]

Never make absolute statements.

 

[Rick Sanchez]

Never make absolute statements.

Only a sith deals in absolutes

 

[lilpink]

Not really important, but I just noticed this. The 'independent' oversight of the PACE trial seemed to come almost entirely from those sharing the PI's ideological positions, which may explain why it was so careless.



https://www.britishinfection.org/files/1515/0093/2785/BIA_-_May_2017_-_Abstract_Book.pdf

Not really not important to me. This is the man who through his own maladaptive prejudices led me to a year of such extreme inappropriate prescribing of psyche meds for a very severe crash of my ME (none of those meds making the slightest difference to the autonomic problems from which I was suffering and which I described more than adequately within a framework Melvin Ramsay would have understood and recognised) that I suffered severe iatrogenic harm which very nearly cost me my life. His faulty diagnosis started that ball rolling. Only by withdrawing from the attentions of secondary 'care' at the end of that year and having the help of my family and the hugely useful 'Ashton Protocol' to wean those drugs very slowly from my system (a truly hellish process in itself) did I start to ease myself out of that hideous place. I still to this day suffer some of the autonomic distress that brought about such a moronic mis-diagnostic label as 'catastrophising' (2004 'speak' for 'MUS) so the modalities favoured by people like Llewellyn did not help in any way at all...they could not be said to be ameliorative for the symptoms I presented. I also suspect that the damage those drugs did over that entire year have created some permanent damage to my brain / CNS. I was already housebound in 2003 before these events occurred, and I am much iller now. I see the abuse of 2004 as one of those very definite 'milestones' in the process of this disease that tend toward moving the trajectory of the disease into a different sphere of experience. I have no sense that I will ever get back to those heady days of only feeling as ill as I did in 2003, and that is largely, I suspect, due to the damage of that year. I wasn't solely at the hands of Meririon Llewellyn, but other BPS stylie doctors too. At that point in my life I only had the information about my disease as seen from the perspective of the MEA, which was nowhere near enough to prevent the damaging schedule I was subjected to, indeed one of the doctors I saw regularly contributed to the MEA magazine. That year was a turning point for me. I learned fast...you have to when the world crashes in like that. My learning curve followed the arc of internet dissemination.... they both seemed to happen hand in hand..and thank goodness for that, as when the next 'biggie' hit in 2011 I was prepared. I knew who NOT to see and I knew who should be asked to provide advice. But we shouldn't have to 'know' all this 'stuff' to protect ourselves from our doctors should we? That we have to gird our loins with protective armour made of a deep understanding of the history, politics and science of this disease in order not to be made iller by our doctors is absurd..truly absurd.

 

[trishrhymes]

Not really not important to me. This is the man who through his own maladaptive prejudices led me to a year of such extreme inappropriate prescribing of psyche meds for a very severe crash of my ME (none of those meds making the slightest difference to the autonomic problems from which I was suffering and which I described more than adequately within a framework Melvin Ramsay would have understood and recognised) that I suffered severe iatrogenic harm which very nearly cost me my life.

His faulty diagnosis started that ball rolling. Only by withdrawing from the attentions of secondary 'care' at the end of that year and having the help of my family and the hugely useful 'Ashton Protocol' to wean those drugs very slowly from my system (a truly hellish process in itself) did I start to ease myself out of that hideous place.

I still to this day suffer some of the autonomic distress that brought about such a moronic mis-diagnostic label as 'catastrophising' (2004 'speak' for 'MUS) so the modalities favoured by people like Llewellyn did not help in any way at all...they could not be said to be ameliorative for the symptoms I presented. I also suspect that the damage those drugs did over that entire year have created some permanent damage to my brain / CNS.

I was already housebound in 2003 before these events occurred, and I am much iller now. I see the abuse of 2004 as one of those very definite 'milestones' in the process of this disease that tend toward moving the trajectory of the disease into a different sphere of experience.

I have no sense that I will ever get back to those heady days of only feeling as ill as I did in 2003, and that is largely, I suspect, due to the damage of that year.

I wasn't solely at the hands of Meririon Llewellyn, but other BPS stylie doctors too. At that point in my life I only had the information about my disease as seen from the perspective of the MEA, which was nowhere near enough to prevent the damaging schedule I was subjected to, indeed one of the doctors I saw regularly contributed to the MEA magazine.

That year was a turning point for me. I learned fast...you have to when the world crashes in like that. My learning curve followed the arc of internet dissemination.... they both seemed to happen hand in hand..and thank goodness for that, as when the next 'biggie' hit in 2011 I was prepared.

I knew who NOT to see and I knew who should be asked to provide advice. But we shouldn't have to 'know' all this 'stuff' to protect ourselves from our doctors should we?

That we have to gird our loins with protective armour made of a deep understanding of the history, politics and science of this disease in order not to be made iller by our doctors is absurd..truly absurd.

Hi @lilpink I hope you don't mind I've broken your post into shorter paragraphs to enable me to read it. I am sorry you suffered so horrendously from this idiot's diagnosis. The idea that someone could in this day and age go back to the old ignorant idea of neurasthenia as an excuse to treat people in this way and not investigate properly is truly frightening and sadly all too common.

 

[Mithriel]

"The list of symptoms often approaches 30 and they are often written in a list, a syndrome called by Charcot ‘
la maladie du petit papier’."

The commonly touted "fact" that diseases are more likely to be psychological the more symptoms they have - and it doesn't take thirty more than three I've seen - just makes me livid. It is purely an atrefact of a disease not have a "shorthand" for want of a better word.

For example, my husband had a thyroid storm caused by his thyroid hormones pouring out after a bad flu, way beyond an overactive thyroid. His symptoms however were extreme exhaustion, severe weight loss, lack of muscle tone, acetone smelling breath, itches, overheating, breathlessness and yellowing of the eyeballs. He was also asked if he was experiencing anxiety as the overload of adrenalin can make you feel that way but he was too tired to care.

Diabetes is the same. Medically it is too much sugar in the blood, but the symptoms are many and varied. Often exhaustion, thirst, increased appetite, weight loss, sweet smelling breath, sticky urine passed frequently and one friend of mine went to her GP because one ankle was swollen only to find that it was the other one which had wasted because of peripheral neuropathy due to type 1 diabetes.

Doctors concentrate on the main things and that usually fixes the smaller effects which is fine until they forget that is what they do and then make these outrageous claims.

Mithriel

 

[lilpink]

Hi @lilpink I hope you don't mind I've broken your post into shorter paragraphs to enable me to read it

No problem at all..I should have done it myself. !

 

[alex3619]

There is fallacious reasoning in MUS, particularly with respect to ME. When the right tests are run we typically have hundreds of verifiable physical problems ... the issue is these tests need to be run on a case by case basis, and require the kinds of tests typically only used by, and understood by, researchers who use them. Most doctors do not even know these tests exist. They do not understand their relevance. Such tests are generally not available to most doctors.

Don't run the right tests, then declare nothing can be found, is not a basis for sound medical reasoning.

Not finding clear disease diagnostic evidence, then declaring it must be psychiatric without any evidence of all, is fallacious. Its also hypocritical.

MUS is a diagnosis of ignorance.

History shows ME patients are not alone in these problems.

 

[NelliePledge]

Yet another name in the rogues gallery of MUS and even more disturbing for not being a psych.

 

[HowToEscape?]

"MUS is a diagnosis of ignorance."

Ignorance or arrogance?
What if the motivation is to toss aside the troublesome patients, and perhaps to enrich a State bureaucracy and it's defenders?

 

[alex3619]

Ignorance or arrogance?

Arrogance supports ignorance and stupidity.

A good quote -

These other factors are part of the system that maintains and supports the stupidity, ignorance and arrogance, but I am not sure they are the actual cause.

The problems existed long before the modern motivations and agendas arose. They are however what allows the basic problems to go unchallenged as the costs to patients and society keep rising.

 

[Forbin]

"The list of symptoms often approaches 30 and they are often written in a list, a syndrome called by Charcot ‘la maladie du petit papier’."

Early in the illness, I think the explanation for this in ME/CFS is pretty simple. At first, one cannot believe that it's possible to feel so terrible and yet be so difficult to diagnose. In an effort to help my doctor make a diagnosis, I naively would report everything I thought might be even slightly relevant, hoping he would say, "Ah, now that you mention that, I realize what the problem is!"

Of course, it never happened. Eventually, it became clear I was just being patronized, so I shut up.

People can suffer with ME/CFS for years before getting a diagnosis (I became ill 5 years before it even had a name in the US) and I suspect that much of the symptom "over-reporting" is just a function of that, i.e. the patient trying to help the doctor make a diagnosis. It doesn't help that CFS seems to be the only disease that officially can't be diagnosed for six months. Once people are diagnosed, I bet they report a lot less symptoms.

Add to that the fact that the disease can involve numerous systems and can indeed present new symptoms over time and the reporting of numerous symptoms doesn't seem very unusual at all.

 

[TiredSam]

Never make absolute statements.

Never?

 

[Invisible Woman]

suspect that much of the symptom "over-reporting" is just a function of that, i.e. the patient trying to help the doctor make a diagnosis.

This is so true. In the early days I can even remember coming home from the docs & thinking maybe I'm just not explaining it properly. Perhaps if I'd mentioned......? Next time I'll bring a list!

Nowadays, if I mention a symptom of the cuff & the doc pricks up his ears its normally me telling him "No, no. That's an ME symptom - been happening for 2 decades. Don't worry about it."

(He was trying to give me antibiotics I didn't need cause I failed a balance test.)

 

[alex3619]

Never?

From my rules of thumb - "8. Question everything - even this statement."

 

[alex3619]

I find there is a problem in that if I bring a list they ignore it, and if I don't they get only one or two bullet points and then they act as if no other problems exist.

 

[alex3619]

"Charcot ‘la maladie du petit papier’" This is appeal not just to authority, but very obsolete authority. Its more likely to be dogma than anything relevant. An appeal to Freud or Charcot in psychosomatic medicine is mostly unimportant waffle.