WE ARE NOT ALONE: POTS hits COVID patients, who get same response we do: dismissal, anti-d’s, anxiety drugs, and “…ALL IN YOUR HEAD…”

[heapsreal]

Is it much better in Australia. Go to a hospital with a severe headache and vomiting for a few days and every Drs first words are it's probably medication over use headache syndrome, so blame the pt. Four days in hospital with no proper pain relief, but gave me meds to stop vomiting that didn't work because my head was pounding. After 4days I finally got in for an mri and it said possible Increased intercrainial pressure. Then got told I need to find a neurologist.
The headache stuff continued for over a week after leaving the hospital and I was like a vegetable. I don't have private health cover but it's quicker to see specialists if you go through the private system, can always go back into the public system if hospitalisation is needed. But still 6 months before I can get into a neurologist. It sounds like each neurologist is very different from each other, some are just full of themselves and some don't care. I just hope I picked the right one????
Always a concern having to mention cfs or I say post viral crap.

 

[Hip]

If you want a good example of a (most likely) physical condition that is currently being given the famous "it's all in your mind" makeover, then have a look at vulvodynia (chronic unexplained pain in the vulva).

The same King's College London that brought you the idea ME/CFS is "all in the mind" have more recently turned their attention to vulvodynia.

Vulvodynia is a mysterious condition with no known causal explanation. Therefore it's ideal material for the somatisation psych brigade.


One researcher at King's has been looking at "psychosocial factors" in vulvodynia. In one of her papers, she says:

Depression, anxiety, catastrophizing, pain-anxiety, pain acceptance, body-exposure anxiety, attention to sexual cues, partner hostility and solicitousness, self-efficacy and penetration cognitions are highlighted as potentially important treatment targets

Not being content to merely publish papers, she has gone on to open a London clinic which tries to treat vulvodynia using biopsychosocial methods.


The biopsychosocial-focused King's College psychology department specialise in taking backward steps in medical science.

 

[Pearshaped]

Dont try to tell them that. They place the depth markers and can change them at will. We're just the lab rats ....

My God, the blind stupidity is truly flucking BOGGLING !!!!

And their almost touching, childlike belief that anti-d's will solve whatever ails 'ya, along with a handful of anti-anxiety drugs and assorted beta blockers. Wait, add some gabapentin, and BINGO!!! you're good to go.

NEXT PLEASE..... (Dr motions towards door) ....

They've been getting away with this for years, and I don't see a new day a-comin'. It depresses me profoundly ...

Yes and the surprising thing is that POTS is actually an elefant in the room,too.
Apart form us and the longCovid folks, it has also struck down postVacc ppl so POTS or / and OH is what almost all of us have in common. My impression is it is more common in all three groups than PENE. On FB, the POTS groups are ballooning, to an such extent that it surprises me.

 

[YippeeKi YOW !!]

f you want a good example of a (most likely) physical condition that is currently being given the famous "it's all in your mind" makeover, then have a look at vulvodynia (chronic unexplained pain in the vulva).

This thread is about the difficulty patients are having getting diagnosed and treated for POTS, or even being given anything other than the usual fob-offs.

The same King's College London that brought you the idea ME/CFS is "all in the mind" have more recently turned their attention to vulvodynia.

Believe me, they weren't alone, and to point the finger solely at King's College is begging the issue ....

 

[linusbert]

They were astounded when fully 70% admitted that they'd cheated , either to get into medical school, or to stay in, or to graduate, or all three. 70% !!!!

reminds me of dr. dr. bartholdy. a german guy who faked and pretended to be a doctor. but wasnt. his patients were happy though.

 

[Jyoti]

Here you go.... I was in the ER this week with elevated HR and BP. They were high enough to make me take this extremely questionable step. I explained to three different people along the way (two doctors and a nurse) that I do not tend toward anxiety and that my life of late has been peaceful and without much stress.

I just accessed the clinical notes on the visit and here is what I find:

She does endorse chronic anxiety,

I guess that makes some sense of why my PCP wanted to put me on Lexapro. But it bears absolutely NO relationship to what I uttered, implied or inferred.

So not only do they look for anxiety first, but it seems that one's own reports can be completely irrelevant.

And the made-up version will follow you.

We know this. Nothing new here, to be honest. But since we are having this discussion and my recent experience reflects a part of it, I thought I would share it as a kind of exclamation point.

 

[linusbert]

Here you go.... I was in the ER this week with elevated HR and BP. They were high enough to make me take this extremely questionable step. I explained to three different people along the way (two doctors and a nurse) that I do not tend toward anxiety and that my life of late has been peaceful and without much stress.

I just accessed the clinical notes on the visit and here is what I find:

I guess that makes some sense of why my PCP wanted to put me on Lexapro. But it bears absolutely NO relationship to what I uttered, implied or inferred.

So not only do they look for anxiety first, but it seems that one's own reports can be completely irrelevant.

And the made-up version will follow you.

We know this. Nothing new here, to be honest. But since we are having this discussion and my recent experience reflects a part of it, I thought I would share it as a kind of exclamation point.

"show me the man and i will find you the mental disease" - joseph stalin's beria
or something like that.

at this point i wonder, does the ER kill more people or save them?

did you get anything positive out of this. did you get some help at all or was it just completely waste of ressources?

 

[Jyoti]

at this point i wonder, does the ER kill more people or save them?

It's not funny, but I find myself, perhaps a bit hysterically:

did you get anything positive out of this. did you get some help at all or was it just completely waste of ressources?

I got two things of value, though I can't say if they will be outweighed by the costs. I got a good EKG, for whatever that is worth. And I got confirmation of low potassium levels, which I had suspected but was supplementing gingerly because I was concerned about overloading it. So I was able to comfortable increase potassium, which I suspect was at the root of my increased HR and BP.

 

[linusbert]

I got two things of value, though I can't say if they will be outweighed by the costs. I got a good EKG, for whatever that is worth. And I got confirmation of low potassium levels, which I had suspected but was supplementing gingerly because I was concerned about overloading it. So I was able to comfortable increase potassium, which I suspect was at the root of my increased HR and BP.

if you cannot get potassium up, you should also take thiamin. thiamin regulates intracellular potassium uptake. and phosphor also is needed for thiamin.
as does b6 for magnesium.

i get the opposite, when i take pot/magnesium , my BP goes up + arrythmia. in that case it could be calcium(vitamin D) deficiency.

 

[Jyoti]

if you cannot get potassium up, you should also take thiamin. thiamin regulates intracellular potassium uptake. and phosphor also is needed for thiamin.

We can take further discussion of this to the thiamine thread.... But I think it was actually an attempt to add thiamine that provoked the latent hypokalemia. I'll get back to it, once potassium is stable enough.

 

[Revel]

To illustrate the subject matter of this thread, on Twitter yesterday was a dysautonomia clinic doctor whose patient had been diagnosed with "anxiety" and prescribed Xanax by a cardiologist seen elsewhere, who was seemingly unaware of the symptoms of POTS:

 

[Hip]

Actually, I don't really want a good example of .... whatever.

I gave an example of the actual process of psychologisation of a medical condition, because the example of POTS is a misleading one. Doctors are not actually telling POTS patients that POTS is "all in their head". POTS is not a new target for psychologisation.

Doctors may be misdiagnosing POTS as anxiety, but misdiagnosis is common in medicine right across the board, so that's nothing new. And it's well known that there is a shortage of POTS specialists, this has been the case for years, and no doubt all the new post-COVID cases of POTS will make it even harder to find a POTS doctor.

So lack of specialists and expertise in POTS is definitely an issue, but not psychologisation. POTS is not becoming a new target for the psychosomatic psychiatrists.



Long COVID on the other hand risks become a target of psychologisation, as a new conference in Finland testifies.

Arch BPS proponent Professor Michael Sharpe is going the Finland conference. Sharpe is known to do consultancy work for the disability insurance industry. He gets paid to spout his opinions that ME/CFS is "all in the mind", and the insurance industry loves him for it.

Then the Liverpudlian turncoat Professor Paul Garner is going to Finland. This was the man who when he was first hit with long COVID, developed a camaraderie with the ME/CFS community, and was vocal in saying how bad it was the ME/CFS is discounted as psychological.

But then when he recovered from LC (and about two thirds do recover naturally anyway within the first year or so), then he turned to the dark side, and started spouting biopsychosocial mumbo jumbo.

 

[Hip]

yet another " .... it's all in your head ..." illness, something that you denied was the case in POTs specifically and ME generally

Pardon? Almost every single ME/CFS patient on the planet knows that ME/CFS has been given the "it's all in the mind" treatment. Nobody is denying this.

What I am trying to point out is that psychologisation of a disease follows a certain process. Often it involves insurance companies or governments who want to save money on disability payouts. There is a long history of this. And it involves research groups who publish papers trying to make a (likely) biological disease look like it has psychological causes. When you see such activities from researchers and insurance companies, then you can say for sure that a disease has been targeted for psychologisation.

 

[linusbert]

Pardon? Almost every single ME/CFS patient on the planet knows that ME/CFS has been given the "it's all in the mind" treatment. Nobody is denying this.

What I am trying to point out is that psychologisation of a disease follows a certain process. Often it involves insurance companies or governments who want to save money on disability payouts. There is a long history of this. And it involves research groups who publish papers trying to make a (likely) biological disease look like it has psychological causes. When you see such activities from researchers and insurance companies, then you can say for sure that a disease has been targeted for psychologisation.

i think there are 3 issues here,
- 1 systemic psychologisation
and
- 2 dr being lazy or ignorant - psychologisation
and
- 3 dr being wrongly educated and lacks critical thinking therefore follows just orders - psychologisation (1 is feeding into this)

 

[hapl808]

i think there are 3 issues here,
- 1 systemic psychologisation
and
- 2 dr being lazy or ignorant - psychologisation
and
- 3 dr being wrongly educated and lacks critical thinking therefore follows just orders - psychologisation (1 is feeding into this)

Good summation. I really think everyone is agreeing, just discussing semantics.

Some specific disorders may be targeted by the establishment - especially those without definitive diagnostics. ME/CFS, chronic lyme, Havana Syndrome, etc. That's different from illnesses where they are never even discussed or considered. The result may be the same: the patient is told it's all in their head. The difference is a level of organization and targeting versus just general dismissiveness and ignorance.

Doctors often seem to do more harm than good these days, which is a shame because I think many are well meaning but arrogant idiots. And I do sympathize with them a bit, because for all our modern medicine, we have no clue what causes the above syndromes and they have to deal with patients who think they've discovered the answer as Hip refers to in his own experience.

Either way, doctors could learn to practice better medicine and develop some EQ, but neither of those things appear on a hedge fund's cap table, so it's not gonna happen.

 

[Jyoti]

And I do sympathize with them a bit, because for all our modern medicine, we have no clue what causes the above syndromes and they have to deal with patients who think they've discovered the answer as Hip refers to in his own experience.

It is a difficult situation to be sure. While I am sure MDs do roll their eyes not infrequently with the 'crazy' ideas some of us bring to them, so many of them have so little curiosity and given that what they have to offer is close to nothing (sometimes less than nothing) it leaves us with little choice. I often feel utterly ridiculous trying to understand processes that are just not in my bailiwick. But since no one I pay to put things together does put things together, it is left to me. And I come in, hat in hand, as humbly as I can with 'questions' they might be wise enough to answer..... wink, wink.

But another point that I think is important to make is that anxiety is a serious condition and deserves to be treated as such. People's lives are as ruined by it as they are by POTS or ME/CFS. Using anxiety as a garbage diagnosis is an affront and dangerous to those who truly have anxiety and need treatment for it as it is for those who have a physiological condition that many doctors would like to call anxiety because of all the reasons listed earlier in this thread.

 

[Hip]

i think there are 3 issues here,
- 1 systemic psychologisation
and
- 2 dr being lazy or ignorant - psychologisation
and
- 3 dr being wrongly educated and lacks critical thinking therefore follows just orders - psychologisation (1 is feeding into this)

Those are the 3 issues, yes, but issue number 1, the systemic psychologisation, is the root cause, because 2 and 3 follow from that.

Doctors follow their training, and if they are taught that a disease has psychological causes, then they will treat their patients accordingly.

Many diseases that are now considered biological were in the past thought psychological, including multiple sclerosis and Parkinson's. But once medical science decides that a disease is biological, all doctors soon follow suit in the way they treat a disease. No doctor these days would for one minute suggest to a patient that their MS is psychological, because they are trained to understand that MS biological.

This is why all the intense ME/CFS patient activism that took place around a decade ago was directed at addressing the systemic psychologisation of ME/CFS, the root cause of the problem, rather than directed at individual doctors who were just following official guidelines.

A great deal of ME/CFS patient activism emerged around 10 or 15 years ago, a pitched battle between patients and the psychiatrists who promoted the psychological views of ME/CFS. Phoenix Rising was actually the nerve centre of this battle. It was very exciting!

Whereas before the Internet and social media like web forums, housebound and bedbound ME/CFS patients had no voice, because they were not able to demonstrate in the streets; but the advent of the Internet facilitated all this online activism.

The battle became very heated, and some ME/CFS activists suffered in health as a consequence of their struggles. Death threats to people like Simon Wessely were even issued (which has to be condemned), and at that time, because of the ferocity of the campaign, in some quarters ME/CFS patients started to be viewed as sort of bedbound terrorists!

Eventually progress was made, especially in the fight against the garbage PACE trial (the dubious study by various psychiatrists which purported to show that CBT could cure ME/CFS).

So ME/CFS is now placed on more biological footing than it used to be, as a result of this patient activism.

The long COVID patients of today are some of the benefactors of the ME/CFS patient activists of the past. Of course it's terrible for anyone to freshly get hit with ME/CFS or long COVID, but at least the climate today has changed, and LC is for the most part viewed as biological. Had LC come along 15 years earlier, it would have been likely categorised as psychological, because at that time almost everyone viewed ME/CFS as psychological.

So good progress has been made, though there is still much work to be done.

 

[linusbert]

Death threats to people like Simon Wessely

DT's from bedbound sick people? i doubt this somehow. is this proven or did he just claim it?

So ME/CFS is now placed on more biological footing than it used to be, as a result of this patient activism.

is it? in germany it is not. not as i did notice.

So good progress has been made, though there is still much work to be done.

long covid by many is viewed as psychological... i dont see much difference.

i didnt follow the debate 15 years ago. so i guess you are right. but we are far from good.

thou i see a general problem with western medicine, i think its deeply corrupt, broken and partially useless or even harmfull. i dont think this is to be solved on a disease by disease activism base. the whole system must change.

 

[Hip]

DT's from bedbound sick people? i doubt this somehow. is this proven or did he just claim it?

Bedbound people are no less capable of making email death threats. Especially those with nothing to lose, and with mental health issues that may cloud their judgement, it's all too easy to fire off death threats.

What I think scared Wessely is that he knows many ME/CFS patients have unstable mental health, so maybe he imagines they are more capable of carrying out such threats. Not all ME/CFS patients are bedbound; the mild patients are able to work, and quite able to go out and about.

Some have argued that Wessely provided no evidence for the death threats, but I have no reason to doubt his claims. He had to seek advice from the police, and had to have a panic alarm fitted in his university desk, according to newspaper reports.

The police advised him to draw up lists of patients on ME/CFS forums and in real life who might present a militant threat to him, based on their comments. I was probably on his list, as I was very vociferously against his views that ME/CFS is a condition maintained by the patients own belief system.

It was not just Wessely who was hit with death threats: back in those agitated days, a British virologist who published a viral study whose results some in the ME/CFS patient community did not like received a barage of hate mail from ME/CFS patients.

She said that one person emailed her daily for a whole month, saying that he wanted her to die. She was completely innocent, had never claimed ME/CFS was psychological, but got caught up in the crossfire because Wessely was one of the authors list on her study.

is it?

There have been great successes. Most of the new ME/CFS patients are not even aware of the activist history, because it's no longer talked about on the ME/CFS forums.

A huge success was when the PACE trial study was finally exposed as a fraud, even though ME/CFS patients had to go to court to get the raw data from the study made available for scrutiny. A huge amount of effort went into fighting PACE, it was a running battle that lasted at least 5 years or more.

The university who conducted the PACE study spent £250,000 on legal fees trying to prevent the raw data from the study being released. But in a landmark legal case, the ME/CFS community activists won the right to get the raw data from the university.

Once the raw data from PACE was examined by independent experts, the PACE study results (that purported to show CBT could cure ME/CFS) were demonstrated to be just bullshit. So PACE was blown out of the water, and this was an enormous battle won by the ME/CFS activists.


In the US, the famous Institute of Medicine report clearly stated that ME/CFS is not psychological. This was much anticipated report was groundbreaking, and also led to a new set of diagnostic criteria for ME/CFS, the IOM criteria


In the UK, the NHS's NICE guidelines have been changed to clearly state that ME/CFS is a physical illness. And remove graded exercise as a ME/CFS treatment. NICE are the organisation that provide the rules and guidelines that all UK doctors must follow.

All this was the result of intense patient activism and long term efforts. Some of the famous activists are listed here.

in germany it is not.

Continental Europe has never been very advanced in the area of the examining the biological basis of mental health, or complex diseases like ME/CFS.

I think this is because Continental Europe has always been strong on social engineering and social conformity, whereas the UK has a different philosophy of individualism. So in Continental Europe, because of this engineering, there is a tendency to try to treat mental health at the psychological and sociological level. Autism is still considered in Freudian terms in France.

thou i see a general problem with western medicine, i think its deeply corrupt, broken and partially useless or even harmfull. i dont think this is to be solved on a disease by disease activism base. the whole system must change.

This is standard cliche that gets passed from one person to another online, without any explanation or rational basis. If you think the system is broken, explain why, and point to a better way of doing things. Propagating these sort of anti-pharma or anti-science sentiments without providing any better answers gets us nowhere really.

 

[linusbert]

Bedbound people are no less capable of making email death threats. Especially those with nothing to lose, and with mental health issues that may cloud their judgement, it's all too easy to fire off death threats.

who cares about that? seriously, people are like kindergarden these days... "oooh charly did say he would hit me with the shovel"...

Some have argued that Wessely provided no evidence for the death threats, but I have no reason to doubt his claims. He had to seek advice from the police, and had to have a panic alarm fitted in his university desk, according to newspaper reports.

The police advised him to draw up lists of patients on ME/CFS forums and in real life who might present a militant threat to him, based on their comments. I was probably on his list, as I was very vociferously against his views that ME/CFS is a condition maintained by the patients own belief system.

It was not just Wessely who was hit with death threats: back in those agitated days, a British virologist who published a viral study whose results some in the ME/CFS patient community did not like received a barage of hate mail from ME/CFS patients.

so he did not present any evidence at all. i dont know the person, i heard in this thread just the first time of him.. but i already know that he is a liar and moron.

the only reason he does not proof it, is because the "threats" are actually not threats but just people venting off.
i know this from the media the recent years. people claim to be victims, say they got death threats without baking it up... and if you check the sources like youtube comments etc. which he claims are evil and hateful... its just people disagreeing.

so she did receive a barage of "hate" mails? so what, who cares? if i do get garbage emails i delete them. its just that simple.
i get emails who accuse me of being bad in bed and having a small d* and too less testosterone (that one might be actually true), cant getting it up... EVERY DAY.

its a big kindergarden. oh boy do i hate victimhood mentality.

btw i also got so called "death threats"... some vicious hateful comments on the internet. you know what i did? ignore the sender. worked like a charm.
i am a sUrVivOr of internet hate!!!


in berlin a few years ago, politicians did put up a little part of a wall (like 3 meter long) with hate posts targeted to them and their immigration politics.
and people where like "oh my... a whole wall full of death threats and hate... the internet is sooooo evil, we are such big victims of violence" ...
and i believe the posts to be actually real, because i did read them posts... and there was nothing at all hateful or evil. DTs were none, it was like people just disagreeing. even the language was quite normal.
but nobody did read the posts on that wall... everyone was just talking about the wall.