Article: We Might Have Long Covid All Wrong (covers FND,ME/CFS,includes Sharpe,Garner, Carson and more).

Maybe but that paper basically says:

Results: LongCovid symptoms bore no relation to FND, being rather things like headaches and ageusia, and try as hard as we might we couldn't find any other way to make any coherent link between the two because it wasn't even looked for.

This is just a load of garbage isn't it?

 

This has always perplexed me. The FND epilepsy experts routinely argue that many patients have both. And they also argue that many with parkinson's have overlapping FND and Parkinson's as separate diagnoses. I was just told the same about functional cognitive disorder--that people can have both POTS and FCD. It's like an escape-free route for any incorrect diagnosis. They will say, well, the FND tremors differ from the Parkinsonian ones--in other words they still fulfill the signs of FND. But it's always seemed to me to be a problematic argument.

 

Some years back I saw a psychiatrist write the same thing about MS in a paper. Its MS and a psych disorder. Together.

 

Seems more of a case of never having adopted falsifiability as necessary, or even important, than having abandoned it. This conversion disorder nonsense started in the late 19th century, when barely 1-2% of what we know today was known, and science as we know it had barely took hold.

Peptic ulcers should have been the end of all of this. It was THE psychosomatic disorder par excellence until it got debunked thoroughly. It was smugly known that bacteria couldn't possibly survive in the stomach lining, an unfalsifiable assumption, a necessary belief to support a narrative model.

Definitely one of the most wasted Nobel prizes ever given. Not a single lesson was learned out of it. If anything, the ideology doubled down and made it clear they would never learn any lesson out of anything they do, not only do they not have to, they are expected to never do that.

 

I think the problematic bit is that they offer no help, or indeed hope ---- e.g. a GWAS study in long Covid may identify thrombosis and then that subgroup could be looked at to see if the pathology can be treated, effects reduced --- benefit.

It seems to be a thing of beauty --- you can have both --- but if you treat the epilepsy ---- then the FND would just be the excuse for the bit we can't treat ---. They're basically pulling a stroke --- or deluded themselves; either way the FND mob seem useless.

 

Assuming untenable or unwarranted, rather than unfalsifiable, given that it was falsified? That timeline is quite something though.

1962: Susser and Stein publish a paper identifying a cohort phenomenon of PUD in England. This is taken as evidence for stress causing PUD.
...
Feb 1983: Gastroenterological Society of Australia rejects Marshall's abstract to present his research at their yearly conference. They deem it in the bottom 10% of papers submitted.
...
1984: Marshall and Warren's paper is accepted by The Lancet in May and published in June. Many reviewers dislike the paper.
1984: The New York Times publishes an article by its medical correspondent Dr. Lawrence K. Altman on the possible link between H. pylori and PUD. He states in 2002, "I’ve never seen the medical community more defensive or more critical of a story" since he joined the newspaper in 1969.
...
1994: Patents for acid reducing drugs expire, removing financial incentive to resist antibiotics as treatment of PUD.
1994: The World Health Organization's International Agency for Research on Cancer declares H. pylori a Group 1 carcinogen.
...
2005: Warren and Marshall are awarded the Nobel Prize in Physiology or Medicine for their work on H. pylori and PUD.​

 

In one of the Australian ME/CFS groups, I'm noticing an increasing number of people who have been given an FND diagnosis. Almost all have an ME/CFS diagnosis also while only a few have suspected ME/CFS. None appear to have any symptoms that would be considered unusual for someone with ME/CFS (eg, some mention they were diagnosed with FND due to reporting a burning pain on their spine).

They all have been fed the boilerplate Wessely/Stone FND spin, ie, that FND is "real" and is caused by childhood trauma etc. The one thing they all have in common is that they all are female.

I've had a burning pain on my spine and neck and the feeling of tight bands around my torso ever since I caught EBV nearly 25 years ago, but I was reluctant to bring this up with my new-ish specialist as the last thing I want is to be labelled with another stigmatised and controversial diagnosis. Luckily she sent me off for an urgent MRI to rule out MS rather than refer me to a neurologist.

 

This begs the (deliberately absurd) comment... If females are traumatised in childhood and become "mentally" ill as a result e.g. developing chronic Lyme, ME, Long Covid, Gynaecological problems, EDS, IBS, "functional" epilepsy/dystonia/leg weakness, does that make them immune to physical disease? And does it matter if it does or not in real terms because doctors appear to treat physical diseases in the people they consider mentally ill with great reluctance, which is why the mentally ill die up to 20 years earlier than the non-mentally ill, and it saves shed-loads of money. Perhaps all females should be deliberately traumatised in childhood - it would save millions of pounds/dollars.

 

I know of an Australian male who had an ME or CFS diagnosis (I do not recall which) who was given an FND diagnosis as well.

 

Yes !

 

Was that a UK person?

 

Perturbing.

 

I saw a thread yesterday on the LC subreddit and someone mentioned a program at Mayo they will take part in where they were told that LC is two things: organ damage, or the rest is their "body being stuck in flight of fight mode".

Which is not even a thing, and the F or F thing is a crude metaphor anyway. What they mean is dysautonomia, but they don't understand it and so continue to gaslight and discriminate, even after 3 years of this. Still, most of the comments were positive and hopeful that this is the answer. Then again most of the activity usually comes from the newly ill, the long-termers are mostly demoralized by now. More newcomers all the time, most of them unaware of LC before.

I will never understand how it became a standard to base medical care, a basic necessity, on lies and pseudoscience. This is no better than how it was before science came along. In fact medicine is now basically split in 2 parts: the science part that works, while the rest is basically medieval, made up of stories and allegories. Very close to religion, very spiritual.

If it wasn't for increased standards of living, nothing would be better. The only reason our quality of life is better, and for some it's barely, than those before us is because of a massive increase overall, and modern innovations like the Internet. So, mostly science and engineering and centuries of hard work.

I really wonder what the body count of this ideology is. For sure it's in the top 5 of most harmful ideologies ever unleashed on the world. And I studied political science a bit, I mean what I'm saying here, but to be fair, most political ideologies are just flavors of the same, there are really only a handful of those that ever cause widespread harm. But psychosomatic medicine for sure is right there near the top.

 

@Hutan.

I agree that EEG specificity and sensitivity can be problematic but usually the pwEpilepsy have had previous EEG’s that show their seizure activity. It is possible to develop a new presentation of a seizure disorder with a new pathology. That is investigated for all known causes. We also do blood tests post seizure, there is an increase in certain blood chemistry. No FND diagnosis is made until the person is thoroughly investigated.

Unfortunately there is a difference between reading papers as a layman, or training in reading the evidence base of a paper, versus clinical training and experience. When doctors of any specialty start throwing out diagnoses like “functional disorder and psycho-social overlay”, I am afraid, I am one big sceptic of their credibility.

The amount of investigation for functional disorder is huge, in terms of man hours and technology. It is not a diagnosis you make on the history from a patient, a “feeling” the doctor has, a “I think it is this” - that is arrogant posturing, as far as I am concerned.

The clinician has to prove it, they have to rule out everything known. (Yes, not everything is known in ME/CFS…. but as retired psychiatrist and with clients I did care for) The person with ME/LC, are just like regular people, and have symptoms that vary across multiple organ systems. Can a doctor and specialist know everything? no, but it is their responsibility to learn to improve their knowledge, to take better care of their patient and to reduce stigmatisation.

I, personally, if someone had a symptom I didn’t understand, I would record it as a somatic symptom (i.e. physical) vs mental (arising from the brain) eg.thoughts, feelings, behaviour, hallucinations, unusual movements, tics…the list is quite long…

That does not mean it is psychosomatic, it is just a symptom a patient has identified when we are doing routine physical history and examination and has not been mentioned by their GP or other specialist. We read through all their specialist notes before starting our mental health assessment and often these have been identified as relating to the disease/disorder by others. Psychiatrist usually expect GP’s to have done full physical history and examination and work up for any underlying conditions, prior to referral. Of course many do not….They get a full written mental health assessment (often 8-10 pages long- sometimes up to 20) and makes for education….and hopefully a reminder to do these essential history, examination and checks.

Psychiatrists, as part of their training, have to undergo retraining and pass a post-graduate course in identifying medical disorders, on top of the medical degree that we have been practising with for the minimum, usually of two years. This is because psychiatrists, tend to do a lot of talking and not touching our clients because we have been taught to observe behaviour very carefully for signs of arousal, as that is for safety of the patient, ourselves, the mental health team and other health professionals and the public. Arousal can be from a multitude of factors and not just “stress” or feeling uncomfortable talking to a psychiatrist, there are easy to observe psychiatric symptoms and there are neuropsychiatric processes going on that must be excluded and treated.

If somatic symptoms were significant or distressing for the patient, I would have emailed, the appropriate colleague for a verbal opinion, and start investigations, usually bloods and (imaging if the hospital will allow as there is often strict criteria for getting scans and often need discussion with a radiologist around urgency and appropriateness). Usually when people come under the care of the mental health service, where the psychiatrist is responsible for a patient’s physical as well as mental health (or in more mild to moderate illness, we share the care with the person’s GP, and they care for the physical illness and we care for the psychiatric disorder and are professionally responsible for medication and education and management of side effects but inform GP they are starting medication. (but the mental health team, nurses especially, are assigned to monitor for side effects).

ME/CFS is viewed in my country as a primary care health diagnosis and only people who have troubling mental health symptoms get a referral to a community mental health team. Of course GP’s get very confused by ME/CFS symptoms as they have had no training or inadequate BPS training (and I have been a victim of that too). Also people choose to go private and for most people that can be positive, the rest is like the Wild West of prescribing and physical treatment and they get away with it by quoting low-evidenced psychiatric literature.

Actually I have seen this by some psychiatrists in the public sector and is ongoing….and hoping long covid will give them a big wake-up call. (But not holding my breathe but cautiously hopeful).

Not sure about that as our professional college that still seems to be publicly operating in the 90’s, and reflected in the appalling lack of research into ME/CFS, never respond to people questioning the BPS response so whether they change their ways, I do not know.

Getting back to functional disorders and tics. Tics are often associated with other developmental disorders eg. ADD/ADHD, and a long list. We usually take a history for all of these disorders including family, friends, work colleagues and teachers (with their consent) to ask in what situations the tics occur and other neurodevelopmental behaviour occurs. This can range from non-specific behaviour like being restless, impulsive to specific signs (related to severity and risk). We can go and observe children (not adolescents) at school on occasions.

Psychologists are trained to observe for tics but not to the level of a psychiatrist, pediatrician or neurologist. They can describe the tic in a simple fashion, but some senior child and adolescent psychologists could make a correct observation with training and clinical experience. Tics on the whole, fulfill certain criteria for a movement disorder with clear torsion of the neck, head and face (and other parts of body, shoulders etc), they may also have focal neurological signs on physical examination (abnormal plantar response and hyper-reflexia) - these are called soft signs as they are non specific to a diagnosis but indicate neurodevelopmental damage of some description due to multiple causation and often not treatable with any medication or other modality.

I do appreciate you are probably talking about all the discussion and emerging psychiatric literature on the the Tik Tok “functional tic disorders” which is being publicly discussed everywhere. I think psychiatrists and any specialist should be cautious on saying these are functional without a proper diagnostic work-up. Unfortunately, specialists do like to be quoted for the press or even appear on TV talking nonsense and make blanket statements around causation. A real concern for me, is that a lot of children have not been able to access child and youth mental health services during the pandemic (and they were very stretched prior) so saying these are pandemic “stress” is negligent.

Can a child, youth or adult learn how to imitate a tic and Tourette’s, yes they can. But they have to continue to tic in multiple different environments, home, school, work, friends and especially when they are relaxed. People can tic in their sleep for example and be observed by parents. People’s tics can worsen with eg. times of intellectual and emotional stress or lessen when doing complex activities. We question people on what aggravates and relieves the frequency of ticking. Often it is the client makes an observation of their increased tic behaviour and go “oh yeah, whenever I am with this person, they make me feel uncomfortable and I tic more” and then we talk about what makes them uncomfortable and see if we can help them. That is them describing a psychological stressor, we do not assume there is one.

Edit: typos and a few additions for clarity

 

The leaders in the functional ideology, at least the bastardized version applied to us, have published more than once, and commented outside of academia, "diagnosing" people with functional movement disorders watching videos on tik-tok. Never saw the patients. Never talked to them or examined anything.

Not randos. The leaders of this, some well-known names. Indeed their credibility is nil, but somehow we are the only ones seeing that. Their stuff is beloved. I mean they must very very good if they can do that simply from watching videos, not even knowing if the videos are genuine rather than people acting out on memes like planking, or the fake outrage about Tide pods a few years back "omygod functional eating disorder".

The average psychosomatic diagnosis is made in less than a minute and it basically bars you for life from having competent medical care, almost an actual stigmata. I don't even think it's particularly close to a minute. There is no care made into it in real life, all those caveats don't even last any longer than it takes to flush a toilet.