141 replies to this topic

[Hip]

Having had both, I don't believe that long covid is related to CFS, even though both check some of the same boxes.  

 

You did not respond to my question regarding whether your initial fatiguing illness met the Canadian consensus criteria (CCC) for ME/CFS. If you don't satisfy these diagnostic criteria, it casts some doubt over whether you really had ME/CFS. I am assuming you did not satisfy the CCC, in which case, we don't really know if you actually had ME/CFS.

 

You also did not answer my question about the severity of your fatiguing illness. If you only have mild symptoms, which means you are still able to work full or part time, it's much easier to get into remission than if you are moderate or severe. Severe ME/CFS means you are bedbound most of the day and night, and only up and walking around the house for a few hours a day. I've been severe, but at present am moderate.

 

 

 

As for your comparison of your initial fatiguing illness with long COVID, and your conclusion that because the symptoms were slightly different they must be different diseases, this is unscientific. First of all, you may not have had ME/CFS anyway, if you did not satisfy the CCC diagnostic criteria.

 

Secondly, even amongst those who have proper ME/CFS, as defined by the CCC diagnostic criteria or the updated version called the international consensus criteria (ICC), symptoms can vary from one patient to the next. Indeed, some ME/CFS patients do not have the fatigue symptom at all, yet suffer from extremely debilitating PEM and brain fog. Yet other ME/CFS patients have constant crushing fatigue. So you have no fatigue or totally crushing fatigue, and still have ME/CFS.

 

So I don't think your personal experience can answer the question of whether or not long COVID is just another form of ME/CFS.

 

 

You might find it interesting though that long COVID is 4 times more prevalent in females than in males. The female to male ratio of those hit with this disease is 4:1. Well that is exactly the same ratio as we find in ME/CFS. So that is a further suggestion that LC and ME/CFS may be the same disease. 

 

 

 

Edited by Hip, 07 December 2022 - 11:46 PM.

[Hip]

I think patients you find of many disease forums are not a representative sample.  I think aspects of disease forum culture can be detrimental to the recovery of the members, especially where there is a bias towards conventional medicine. Many disease forums receive funding from drug companies, and this can impact the moderation policies, putting certain treatment modalities off-limits.  In the worst of these forums, the members believe a pharmaceutical company is one day going to develop a cure for their disease, and they believe that's their best hope.  I suspect many of those who recover don't stick around, or never got sucked into the culture of such a forum.   

 

The forum I spend almost all of my time on, the Phoenix Rising ME/CFS forum, is very well known as a place where patients constantly experiment with a very broad range of treatments, from alternative health approaches with supplements and herbs, to experiments with the latest drugs which research suggests might help ME/CFS, to custom synthesised drugs and peptides, as well as nootropics, dietary approaches (eg, ketogenic diets, autoimmune paleo diets), electromedicine approaches (like cranial electrotherapy stimulation for example), yoga, acupuncture, antiviral approaches, mitochondrial support approaches, microbiome approaches, immune modulating drugs and supplements, etc, etc. You name it, people on Phoenix Rising have tried it at some point or other.

 

People on Phoenix Rising are highly motivated to find answers, and members have spent years if not decades of their lives pursuing treatment after treatment in the hope of finding something that will help. I myself have been trying different treatments on a weekly basis for 16 years, and there are many others like this.

 

I like the culture of Phoenix Rising, because I like people who have an enthusiastic positive attitude, and are always willing to experiment with any interesting new treatment ideas. And when people find something that helps them, they want to share that with others on the forum, in the hope that it will benefit others.  

 

Sadly, in spite of this massive enthusiasm, there are very, very few who have found cures on Phoenix Rising (in spite of having over 30,000 members). Though many have found treatments which improve them a little, or which address specific symptoms of ME/CFS.

 

In my case, high dose selenium 400 mcg daily moved me from severe to moderate. I am not sure why this was so helpful, but selenium can have some antiviral effects for coxsackievirus B, the virus which triggered my ME/CFS. Unfortunately most other ME/CFS patients who tried my selenium protocol did not get much benefit.

 

 

 

 

Edited by Hip, 08 December 2022 - 12:12 AM.

[Empiricus]

You might find the FLCCC Long Covid Protocol helpful.

 

https://covid19criticalcare.com/treatment-protocols/

 

Thanks Joe, I hadn't seen they had such a protocol.   

[Empiricus]

You did not respond to my question regarding whether your initial fatiguing illness met the Canadian consensus criteria (CCC) for ME/CFS. If you don't satisfy these diagnostic criteria, it casts some doubt over whether you really had ME/CFS. I am assuming you did not satisfy the CCC, in which case, we don't really know if you actually had ME/CFS.

 

You also did not answer my question about the severity of your fatiguing illness. If you only have mild symptoms, which means you are still able to work full or part time, it's much easier to get into remission than if you are moderate or severe. Severe ME/CFS means you are bedbound most of the day and night, and only up and walking around the house for a few hours a day. I've been severe, but at present am moderate.

 

As for your comparison of your initial fatiguing illness with long COVID, and your conclusion that because the symptoms were slightly different they must be different diseases, this is unscientific. First of all, you may not have had ME/CFS anyway, if you did not satisfy the CCC diagnostic criteria.

 

Secondly, even amongst those who have proper ME/CFS, as defined by the CCC diagnostic criteria or the updated version called the international consensus criteria (ICC), symptoms can vary from one patient to the next. Indeed, some ME/CFS patients do not have the fatigue symptom at all, yet suffer from extremely debilitating PEM and brain fog. Yet other ME/CFS patients have constant crushing fatigue. So you have no fatigue or totally crushing fatigue, and still have ME/CFS.

 

So I don't think your personal experience can answer the question of whether or not long COVID is just another form of ME/CFS.

 

You might find it interesting though that long COVID is 4 times more prevalent in females than in males. The female to male ratio of those hit with this disease is 4:1. Well that is exactly the same ratio as we find in ME/CFS. So that is a further suggestion that LC and ME/CFS may be the same disease. 

 

Your response is incredibly condescending.  

 

When I claim to have made a full recovery from CFS, your response is to allege I never had CFS.  Do this with everyone who recovers and soon you will have convinced yourself that a particular disease is basically incurable.   

[Empiricus]

Gosh, I can't help but wonder how many people the "Phoenix Rising forum for CFS/ME patients" managed to injure or kill by having censored the sharing of timely information from non-peer reviewed articles about the safety and efficacy of the mRNA vaccines--obviously an issue of utmost concern for people with compromised immune systems such as their forum membership!  

 

Posting About COVID-19 and the COVID Vaccines

To keep Phoenix Rising free of conflict and political disputes around COVID-19 and the 
COVID vaccines, we ask that members only post information from peer-reviewed journal articles and news sources without a strong political bias.

Links and information from organizations which lack transparency or with a track record of spreading partisan conspiracy theories may be reported to the moderation team, who will remove them. 

It is fine however to detail your personal experiences with COVID and the COVID vaccines.

 

 

https://forums.phoen...es-on-pr.85080/

Edited by Empiricus, 08 December 2022 - 11:54 AM.

[pamojja]

Gosh, I can't help but wonder how many people the "Phoenix Rising forum for CFS/ME patients" managed to injure or kill by having censored the sharing of timely information from non-peer reviewed articles about the safety and efficacy of the mRNA vaccines--obviously an issue of utmost concern for people with compromised immune systems such as their forum membership! 

 

https://forums.phoen...es-on-pr.85080/

 

I did cease to post regularly there, after appealing to the moderators that I wouldn't be able to support their censoring policy out of ethical reasons, starting with covid. After all, many ME/CFS patients aren't able to read much - if any at all - than some they find on PhoenixRising. With the only allowance to post CDC's, Fauci's and GAVI's words, the epidome of creating an exclusive belief bubble for ME/CFS - and no real data for risks evaluation allowed til now - with possibly very tire consequences.

 

Really irresponsible, the whole bunch of moderators there should be prosecuted for the potential harm they thereby allowed to happen in their cummunity. And since personal experiences are still allowed to post, one can read of much personal harm from the vaccines due to their policies there now (compared to longecity). The death do keep quiet.

 

ME/CFS patients are often gaslighted by being told: The whole disease is in their mind and are malingering only. Some in the community have become the monsters they faught for such a long time, and now do exactly the same to others. As Hip with all disagreeing with his hate-speech tirades.

 

He has gone much to far. He never will be able to acknowledge the harm he himself promoted to some others, hiding it up by accusing all voices of reason, what actually he himself invested so much energy in. Bullying everyone with a reasonable risks/benefit analysis. Like so many here actually open to vaccination, but becoming weary of this experimental one.

 

Edited by pamojja, 08 December 2022 - 12:41 PM.

[Hip]

Your response is incredibly condescending.  
 
When I claim to have made a full recovery from CFS, your response is to allege I never had CFS.  Do this with everyone who recovers and soon you will have convinced yourself that a particular disease is basically incurable.

 

It's not at all condescending, it just goes straight for the facts. 

 

I asked you a civil question, regarding your ME/CFS diagnosis and severity. Not even a personal question, just a simple scientific one. 

 

You refuse to answer. That comes across as uncivil, not to mention cagey. I've talked to thousands of ME/CFS patients, and I always ask them questions about the criteria they used to diagnose, their severity, and what viral infections showed up on their blood test, etc. Not one patient has ever refused to answer these simple questions. Why should they, they are looking for help? So your refusal to answer seems rather oddball, I really don't understand why you are keeping these details secret — unless as I speculated, you know full well that you did not have ME/CFS as defined by the CCC or Fukuda 1994. 

 

We cannot have a scientific discussion if you hide the pertinent facts. 

 


 

Gosh, I can't help but wonder how many people the "Phoenix Rising forum for CFS/ME patients" managed to injure or kill by having censored the sharing of timely information from non-peer reviewed articles about the safety and efficacy of the mRNA vaccines--obviously an issue of utmost concern for people with compromised immune systems such as their forum membership!  
 
 
https://forums.phoen...es-on-pr.85080/

 

Those rules were put in place by the mod team to stop all the arguing that put huge burdens on the mods to clean up. The mod team were spending hours a day moderating threads with intense arguing about COVID. The mod team are sick ME/CFS patients themselves, and it is unfair that arguing members were causing so much extra work for them, without any regard for the fact that the mods are unpaid volunteers. So the decision by the mod team was not about censorship, but reducing their strenuous workload. Patients were free talk about any side effects they experienced personally from the vaccines.

 

Some people whose name I will not mention were posting a lot of deliberately misleading information from Swiss Propaganda Research (now renamed Swiss Policy Research) on Phoenix Rising, an organisation which Media Bias / Fact Check rates as a conspiracy theory peddler, with poor factual accuracy. 

 

ME/CFS patients are very well informed about vaccine side effects anyway, because about 1% of ME/CFS cases is triggered by a vaccine. All sorts of vaccines can trigger ME/CFS, including the COVID vaccines, but the most common vaccine trigger is the hepatitis B vaccine.

 

 

 

Edited by Hip, 09 December 2022 - 03:13 AM.

[Hip]

the whole bunch of moderators there should be prosecuted for the potential harm they thereby allowed to happen in their cummunity.

 
Wow, whatever happened to your Buddhist beliefs in compassion and understanding for others, pamojja?
 
The entire mod team on Phoenix Rising were under siege because of the deluge of arguments caused by people making polemical COVID vaccine posts (and you were one of the culprits of these COVID polemics), but instead of having compassion and understanding for the stress you were putting the mod team through, some of whom are bedbound with sickness, you instead say you want to prosecute these mods that work tirelessly on behalf of the whole ME/CFS community.  

Edited by Hip, 09 December 2022 - 04:11 AM.

[pamojja]

You and I know what happened at PhoenixRising. While you made many adhominem attacks, I only posted emerging information other than from CDC and alike. While you always reported my 'non-official' sources - and thereby making mods busy with deleting, I only reported your personal attacks. Not your sources with conflict of interrests.

Wow, whatever happened to your Buddhist beliefs in compassion and understanding for others, pamojja?

I'm responsible for my well evaluated acts, so are the moderators at PhoenixRising - no escape from consequences for both of us. I explained to them for their own good. They couldn't agree. Now there are consequenses for them and many more others they harmed.

The entire mod team on Phoenix Rising were under siege because of the deluge of arguments caused by people making polemical COVID vaccine posts (and you were one of the culprits of these COVID polemics), ..

I only posted information from other sources together with sound questioning. You posted the official CDC lies, and attacked everyone repeatedly not agreeing with you, as you do here at Longecity. Both deleted by mods there.

However, since beginning of Covid you used in many posts adhominem-attacks here too. I could quote whole pages of it. You couldn't quote what you accuse me of at, even at a tiny fraction compared to yours.

Not adhering to truthfulness will have tire consequences you can't foresee yourself. Especially since you already life under hell-like conditions. Understanding does mean forgiving, certainly not praising the harm you and the mods do to others and themself. But by pointing it out.

Edited by pamojja, 09 December 2022 - 01:33 PM.

[Daniel Cooper]

the whole bunch of moderators there should be prosecuted for the potential harm they thereby allowed to happen in their cummunity.
 

Wow, whatever happened to your Buddhist beliefs in compassion and understanding for others, pamojja?
 
The entire mod team on Phoenix Rising were under siege because of the deluge of arguments caused by people making polemical COVID vaccine posts (and you were one of the culprits of these COVID polemics), but instead of having compassion and understanding for the stress you were putting the mod team through, some of whom are bedbound with sickness, you instead say you want to prosecute these mods that work tirelessly on behalf of the whole ME/CFS community.

 

Don't you think it's a little ironic Hip, your apparent calling out of Pamojja's statement about prosecuting mods for their actions on this issue when you yourself have called for prosecutions of people that make statements contrary to official government covid policy on numerous occasions?

 

Let's not let this thread turn into a personal back and forth about activity at another site btw. After it started out on such an even keel with accusations of murder against those whom the OP disagrees with I'd hate to see it devolve into over the top hyperbole.
 

[Hip]

Don't you think it's a little ironic Hip, your apparent calling out of Pamojja's statement about prosecuting mods for their actions on this issue when you yourself have called for prosecutions of people that make statements contrary to official government covid policy on numerous occasions?

 

I would have liked to have seen major antivax groups prosecuted for promulgating vaccine misinformation. Media outlets like Fox News, for example. Unfortunately, according to this article, you can only prosecute organisations which to begin with have a duty of care. Most professions operate under a duty of car. But journalists apparently do not, and so are usually not held accountable for their actions by the courts. Therefore difficult to sue.

 

Although I found it interesting that Alex Jones of Infowars was fined a cool $1 billion for promoting the conspiracy theory that the Sandy Hook school killings were faked.

Edited by Hip, 10 December 2022 - 05:33 AM.

[Empiricus]

You and I know what happened at PhoenixRising. While you made many adhominem attacks, I only posted emerging information other than from CDC and alike. While you always reported my 'non-official' sources - and thereby making mods busy with deleting, I only reported your personal attacks. Not your sources with conflict of interrests.

 

Pamojja, this is very disturbing.  You went out of your way to inform CFS sufferers about the safety of the COVID vaccines, and the OP sought to have you censored. 

 

Given the fact that the vaccines have harmed a lot of people, the OP's topic question reads like some kind of twisted projection.   

Edited by Empiricus, 10 December 2022 - 09:35 AM.

[Empiricus]

It's not at all condescending, it just goes straight for the facts. 

 

I asked you a civil question, regarding your ME/CFS diagnosis and severity. Not even a personal question, just a simple scientific one. 

 

You refuse to answer. That comes across as uncivil, not to mention cagey. I've talked to thousands of ME/CFS patients, and I always ask them questions about the criteria they used to diagnose, their severity, and what viral infections showed up on their blood test, etc. Not one patient has ever refused to answer these simple questions. Why should they, they are looking for help? So your refusal to answer seems rather oddball, I really don't understand why you are keeping these details secret — unless as I speculated, you know full well that you did not have ME/CFS as defined by the CCC or Fukuda 1994. 

 

We cannot have a scientific discussion if you hide the pertinent facts.  

 

Wow. More condescension from you. 

[Hip]

You went out of your way to inform CFS sufferers about the safety of the COVID vaccines, and the OP sought to have you censored. 

 

I never like to censor anyone. I enjoying arguing with people too much to want to censor them! 

 

And contrary to what pamojja said above, I never reported any one of his posts on Phoenix Rising. I much prefer to get into an argument with the person, and try to win that argument using facts and science.

Edited by Hip, 10 December 2022 - 05:25 PM.

[Hip]

While you made many adhominem attacks

 

As someone with empathetic abilities, when discussing things with people, I tend form a picture of the mind of the person who I am talking to, a sense of their personality and philosophical stance.

 
In your case, pamojja, correct me if I am wrong, but I see someone who is a bit of a rebel from the establishment, a bit of a 1960s hippy character or a New Age individual, who has a strong distrust of scientific conventional medicine, who detests the pharmaceutical companies, and who believes herbs and supplements should should be used to treat disease, not drugs.
 
Therefore when I see your campaigns against COVID vaccines, I cannot help view what you say in the light of your philosophy. 
 

Like anyone with strong philosophical ideology, you may not be interested in what is pragmatically best, you may more interested in advancing your philosophical position on the world. This is what you find with people who have a strong philosophy: they tend to place their philosophy before any pragmatic solution.

 

When discussing what people post online, it is sometimes useful to comment on their underlying philosophy, because that philosophy may be the basis of the position they take. People may perceive these comments as a personal attack, but they are not intended to cause offence, just throw light on the situation.

 

For example, Mind on this forum is someone with philosophical beliefs, but they are a little different to pamojja's: in Mind's case, he has libertarian beliefs, which means he does not like the government or any authority to impose rules on people. So this explains why Mind is against lockdowns, enforced wearing of masks, and vaccine mandates. All of Mind's posts are informed by his philosophical stance. Mind is not against masks or vaccines per se, just against them people being coerced to use them. 

 

 

 

In discussions online, it would be nice if people could detail their philosophical conflicts of interest, as I think this would help diffuse frictions and lead to better understanding all round. 

 

So for example, when Mind writes "masks don't work", that comes across as a scientific statement, which then leads to arguments. But if instead he wrote "As a libertarian, I don't support mask mandates, and a wonder how effective masks are anyway", then that statement gives a much better understanding of his position. 

 

With pamojja, if he were to write "as a New Age hippy, I am suspicious of all conventional scientific medicine, and prefer to use herbs and supplements to treat my illnesses. Again, this would allow everyone to understand where pamojja is coming from, and so would tend to diffuse arguments.

 

If people make it clear that their health and medical views are based on their philosophies, then it leads to better understanding all around. I think there would be more harmony online if people explained a bit about who they are, and what they believe, before they engage in the issue being debated.

 

You usually find that most arguments online are caused by people who have a philosophical belief that they want to promote. Whereas when you get two people online who are just looking for pragmatic solutions to a problem, there are rarely any arguments, because both people just want to find a solution; they are not interested in obtaining world domination for their particular philosophical ideology. 

 

 

 

 

 

Edited by Hip, 10 December 2022 - 05:46 PM.

[Daniel Cooper]

I never like to censor anyone. I enjoying arguing with people too much to want to censor them! 

 

And contrary to what pamojja said above, I never reported any one of his posts on Phoenix Rising. I much prefer to get into an argument with the person, and try to win that argument using facts and science.

 

 

Seriously? You want to prosecute people that disagree with you. I'd call that the ultimate censorship.

[Dorian Grey]

I've often pondered a mental picture of you Hip.  Avatar says you're from the UK, but you've got a rather blunt/opinionated affect, that comes across more like an ugly American, almost New Yorker.  

 

No offence intended...  

 

You seem rather young and idealistic, with an innate trust in government & experts; and government experts in particular.  With age, many come to see how politics corrupts science, and we lose our faith in the infallibility of even the most educated and powerful public figures.  

 

The current culture wars (woke vs conservative) remind me of a quote often attributed to Churchill: "If you are not a Liberal at 25, you have no heart. If you are not a Conservative at 35 you have no brain".  

 

Again, no offence intended.  I just find it surprising to see a great thinker like you, who still defends the old COVID narrative of 20/21 so strongly.  Nearly all of us (ME) masked up and got the jabs, and omicron still swept the planet.  I've come to put my faith in doctors who advocated treatment.  Am surprised when I encounter those who still believe in Fauci & his follies.  

[pamojja]

I never like to censor anyone. I enjoying arguing with people too much to want to censor them! 

 

And contrary to what pamojja said above, I never reported any one of his posts on Phoenix Rising. I much prefer to get into an argument with the person, and try to win that argument using facts and science.

 

Just an long chain of lies, to fabricate even more elaborated but nevertheless self-defeating adhominem-attacks.

 

That is an excerpt of the conversation with the mod at PhoenixRising at the time (name hidden). You've been really the only attacking me in that thread, and though the mod of course not specifically admitting you've been reporting, but nevertheless suggesting sort of retaliation:

 

 Screenshot_20221212-145845~2.png   136.08KB   0 downloads  Screenshot_20221212-150010~3.png   118.51KB   0 downloads
 

 

As someone with empathetic abilities, when discussing things with people, I tend form a picture of the mind of the person who I am talking to, a sense of their personality and philosophical stance.

 

In your own words about your emphatic skills in 2017 on PR:

 

 

Myself, I used to be quite good in the empathy department (but brain damage from my viral brain infection dramatically reduced my empathetic skills).

 

In your case, pamojja, correct me if I am wrong, but I see someone who is a bit of a rebel from the establishment, a bit of a 1960s hippy character or a New Age individual, who has a strong distrust of scientific conventional medicine, who detests the pharmaceutical companies, and who believes herbs and supplements should should be used to treat disease, not drugs.

 

Really sort of funny how far twisted your adhominems have become. PhoenixRising is full of reports by you admitting to past promiscuity, exotical drug experiments and decades of unemployment due to disabilty.

 

While I abstained from alcohol or drugs completely since at least since 30 years ago. Allways been mongamous with one partner, so nothing hippy-like there either. Always earned for my living myself.

 

Only exception are of course pharmaceutical drugs and vaccinations. I of course always treated serious infections (bilharzia, malarias..) the pharmaceutical way, and got all vaccination - for example for my over 1 year trip to Afrika (and yes, even there I sticked to my ethics - despite easy sexual offerings..).

 

Only with a walking-disability at age 41 - and with pharmaceutics or invasive surgery nothing left to really help from conventional medicine - I did as a last resort tried many natural approaches of life-style changes and nutrition.
 

So yes. Diseases which are scientifically known not to be reversible with drugs, no reason of course not to try less scientifically proven but harmless natural medicines. Really no garantee if works it works in any particular case, there are just too many confounders. But in the case with me late in life it did indeed.

 

If that late-life health realization despite Buddist shaven head makes me a hippy, then whatever.    But I beg to differ in ethics. Which is very opposite to your negligence in so many areas.
 

Edited by pamojja, 12 December 2022 - 05:49 PM.

[Hip]

You seem rather young and idealistic, with an innate trust in government & experts; and government experts in particular.  With age, many come to see how politics corrupts science, and we lose our faith in the infallibility of even the most educated and powerful public figures.  

 

 

Well I take that "young and idealistic" as a compliment. But fact I will be drawing my pension within a decade, so not that young! Though I tend to be a bit of an eternal student type, so my outlook is perhaps similar in some respects to a university student in the 20s. I've always enjoyed learning new things. 

 

I don't pretend that there is no corruption in the world. However, I have noticed that ever since right wing populist politics emerged in the West about 10 years ago, the general public have become increasingly distrusting of authorities and experts (whether that is in science, medicine, economics or whatever).

 

And even though the general public do not understand the complexities of these subjects, they still go online and fume with anger and rage at errors or perceived errors that the experts have made. And most of the time, these fumingly angry people have got the wrong end of the stick, because they do not fully understand the complexities of the subject.  

 

 

 

At the extreme end of the spectrum, you have these people who burned down a COVID vaccination centre in France, or in the UK, burned down 5G mobile phone towers, because they believed in the conspiracy theory that 5G was causing the pandemic. In the UK, our Chief Medical Officer Professor Chris Whitty was attacked by a couple of young guys while taking a walk in a central London park, for his perceived wrong doings of handling the pandemic (he did nothing wrong, really).

 

A lot of the time, this public rage is fuelled by dubious websites who promote anger by posting unscientific nonsense. So the Internet is playing a major role in this populist distrust of technical experts. 

 

I don't want to live in a society were we are governed by the aggressive actions of the badly informed angry masses, or by the madness of crowds.

 

 

 

I don't take sides politically, and I think right wing populism is good for certain things, and represents some marginalised people, such as the working classes (that the liberal left are not catering for). However, this populist approach dangerous when it comes to complex subjects like science, because good science is not something that can be created from an angry crowd.

 

I am getting more conservative with age though, as your Churchill quote refers to. So I have more sympathy for the right wingers than I did when I was younger, when my views were more liberal. But I find it disconcerting how angry right wing populists ride roughshod over the complexities of science. 

 

In the UK, we have our own COVID fall guy, Matt Hancock, the government Secretary of State for Health. By and large he did a reasonably good job during the pandemic, made a few mistakes, but this was the case in every country. No country got it perfectly right. But we no longer forgive mistakes and foibles, the general public want blood when any mistake or perceived mistake is made. 

[Daniel Cooper]

Let me ask you this Hip - what do you think about the consensus in the mainstream medical community on ME/CFS? 

 

What percentage of the mainstream medical community believe that ME/CFC is essentially a psychogenic disorder? Of those that believe it is a physical disorder, in your estimation what percentage of those are wrong about the cause and underlying pathology?

 

Do your opinions on ME/CFC diverge from the mainstream medical opinions?  If so, should you be allowed to publicly voice your positions on the subject. Or should you be censored for spreading misinformation? 

[Daniel Cooper]

I would have liked to have seen major antivax groups prosecuted for promulgating vaccine misinformation. Media outlets like Fox News, for example. Unfortunately, according to this article, you can only prosecute organisations which to begin with have a duty of care. Most professions operate under a duty of car. But journalists apparently do not, and so are usually not held accountable for their actions by the courts. Therefore difficult to sue.

 

 

Personally, I would rather live in a free and open society where people can voice their own opinions without fear of reprisals and the government treats it's citizens like adults capable of making their own decisions rather than children with itself in the role of the parent. But that's just me.

[Mr Serendipity]

In the UK, we have our own COVID fall guy, Matt Hancock, the government Secretary of State for Health. By and large he did a reasonably good job during the pandemic, made a few mistakes, but this was the case in every country. No country got it perfectly right. But we no longer forgive mistakes and foibles, the general public want blood when any mistake or perceived mistake is made. 

You mean the guy who broke his own lockdown rules to go cheat on his wife?

Edited by Mr Serendipity, 12 December 2022 - 07:03 PM.

[Empiricus]

You seem rather young and idealistic, with an innate trust in government & experts; and government experts in particular.  With age, many come to see how politics corrupts science, and we lose our faith in the infallibility of even the most educated and powerful public figures.  

 

Personally, I don't understand how someone could suffer from a mysterious illness for many years and retain significant respect for authority and experts—particularly of the medical or public health variety.  

 

Because that's when you discover how little they actually know. You see their tests, treatments, and even their knowledge of medicine is basically worthless to you. Seeing firsthand the gap between their abilities and their authoritative public personas, how can you ever put significant trust in them, especially when it comes to a new and mysterious disease?  

[Daniel Cooper]

Personally, I don't understand how someone could suffer from a mysterious illness for many years and retain significant respect for authority and experts—particularly of the medical or public health variety.  

 

Because that's when you discover how little they actually know. You see their tests, treatments, and even their knowledge of medicine is basically worthless to you. Seeing firsthand the gap between their abilities and their authoritative public personas, how can you ever put significant trust in them, especially when it comes to a new and mysterious disease?  

 

Well, when it comes to censoring "wrong" opinions, most people of that mindset naturally think that their opinions would never be censored, because their opinions are not opinions but are correct facts. It's only the other's guy's opinions that need censoring - because they look at the masses as a bunch of ignorant boobs that need to have someone (and that someone is always the government) take care of them to keep them from sticking forks in light sockets, going out in a shower without a raincoat, or refusing to take mandated vaccines.

 

This sort of thinking really grows out of a disdain for their fellow man. If you think everyone around you is incapable, incompetent and ill informed then of course they just need to sit down and be quiet.

 

They irony is that when the heavy hand of censorship comes down they end up getting choked by it along with everyone else.

[pamojja]

Seeing firsthand the gap between their abilities and their authoritative public personas, how can you ever put significant trust in them, especially when it comes to a new and mysterious disease?  

 

ME/CFS, somtimes not precisely refered to as postviral fatigue syndrom, by its limited research funds is a neglected chronic disease. While other rare diseases get billions of research, ME/CFS a tiny fraction only, while actually not really that rare. Causing so many wasting away for decades in loneliness.

 

Manytimes it is officially seen as a mental disease only, with its advantage of insurance industry being able to deny disabilty benefits.

 

Hip obviously sees a huge gain for the uptick of research in postviral fatigue syndroms by the covid hype. Therefore he uses every opportunity to invest in fear from covid (the original narrative, along with experimental vaccine myths), in the understandable hope, long covid (also a postviral fatigue syndrom) reaseach will uncover bio-chemical markers and treatment for ME/CFS too.

As I said in an other tread already: Hip is understandably sort of desperate due to his long ME/CFS. So before worring about cersorship to himself, he in an utalitarian sense only wants one thing back: living a normal life. Censorship would from his perspective be the lesser evil for the time being.

 

[Daniel Cooper]

As I said in an other tread already: Hip is understandably sort of desperate due to his long ME/CFS. So before worring about cersorship to himself, he in an utalitarian sense only wants one thing back: living a normal life. Censorship would from his perspective be the lesser evil for the time being.

 

I don't think that's entirely true. Hip is not consistent in his desire to prohibit expressing out of mainstream opinions (censorship for thee, but not for me), but he's been entirely consistent in his stated desire to censor/prohibit anything but the "official line" on covid. Really since day one, long before anyone was really talking about long covid or linking it to ME/CFS.

 

He really does honestly believe that no one should be allowed to express any non-mainstream views on covid. He just doesn't apply the same logic to his particular issue of interest.

 

Now, I am sure he does see an opportunity to get more research done on ME/CFS via the long covid route. I don't blame him for that. I just wish he'd apply the same logic on censorship globally as he does to his own pet issue.

[pamojja]

I don't think that's entirely true. Hip is not consistent in his desire to prohibit expressing out of mainstream opinions (censorship for thee, but not for me), but he's been entirely consistent in his stated desire to censor/prohibit anything but the "official line" on covid. Really since day one, long before anyone was really talking about long covid or linking it to ME/CFS.

 

But if you know a bit of his posting history (see for example his excellent and already old https://mecfsroadmap.altervista.org/ . And before real tolerance for any disagreement in every other aspect - anything but covid really - for him long before long covid it was clear where covid will be heading too.
 

For his agenda to realize everyone has to fear covid. Those who decided not to vaccinate because this virus wasn't worse than a bad cold - which I didn't had now for 18 years, despite all co-morbitities for covid, still not having had covid - are his obvious enemies in spreading such frivolous fearlessness in others.

 

Every one like me here on Longecity deciding against a vaccine in this particular harmless instance, and having taken every well-tested vaccine before, are all fighted as anti-vaxxers. To be prosecuted, despite at least me not having been able to change my own father's mind with preliminary research-findings of those experimental vaccines.

Edited by pamojja, 12 December 2022 - 09:04 PM.

[Daniel Cooper]

I'm not familiar with his posts on other sites so guess I don't have an opinion in that area.

 

But, I've yet to see a ME/CFS suffer that thought they had been well treated by the medical establishment and I assume Hip is of the same mind on that subject, yet he seems to be so deferential to them when it comes to covid and willing to hand them the enormous power of essentially deciding who is and who isn't allowed to speak publicly on this topic.

 

This just seems like a huge cognitive disconnect to me.

 

 

[Hip]

Let me ask you this Hip - what do you think about the consensus in the mainstream medical community on ME/CFS? 

 

What percentage of the mainstream medical community believe that ME/CFC is essentially a psychogenic disorder? Of those that believe it is a physical disorder, in your estimation what percentage of those are wrong about the cause and underlying pathology?

 

Do your opinions on ME/CFC diverge from the mainstream medical opinions?  If so, should you be allowed to publicly voice your positions on the subject. Or should you be censored for spreading misinformation? 

 

In the case of the long controversy about whether ME/CFS is an "all in the mind" psychologically caused psychosomatic/somatoform condition, or a real physical disease, this debate has taken place between experts in the field. It has not just been an argument between the experts and ME/CFS patients.

 

Because of unscrupulous activities by the disability insurance industry working in cahoots with some unscrupulous psychiatrists, ME/CFS got recast as psychosomatic illness in the late 1980s, whereas previously it had (mostly) been viewed as a real biological disease. So from about the 1990s onwards, a lot of the medical community started seeing ME/CFS as psychosomatic/somatoform.

 

Coincidently, I posted about this today on Reddit, when someone was asking whether Tony Fauci was involved in cutting funding for ME/CFS patients. 

 

When I first read about the nefarious involvement of the disability insurance industry in ME/CFS myself, I could not work out whether it was a conspiracy theory popular among patients, or a true story. But when I found out that some key intellectuals in the field — professors, physicians, researchers, the Countess of Marr, etc — were also talking about these nefarious activities, then I started to believe it. Because serious intellectuals believed it.

 

 

 

In general in the democratic process in the liberal West, you often have grass roots movements involving the general public. For example, the whole environmental movement originally began as grass roots activism in the 1960s, and slowly over the decades, gained traction, and is now something every government follows. It started as grass root, and eventually became mainstream. 

 

But these grass roots movements involving the people are always headed by some intellectuals who know their stuff. The intellectuals provide clear arguments, and the general public then add their weight to those arguments, by means of protests, demonstrations, etc.

 

This is the sort of democratic process that work well. Intellectuals and experts teaming up with the general public. Intellectuals at the top of the pyramid, and the general public as the base of the pyramid. This is the liberal West at its best.

 

Whereas when you take something like the antivax movement, this involves a lot of the general public, but there are no intellectuals or experts at the top of the pyramid. Instead, the antivax movement is headed up by idiots, not intellectuals. 

 

Do you see the difference? 

 

In some of the populist movements we see today, the movement is not headed by intellectuals, but by the witless general public who have not teamed up with experts, but who get their info from conspiracy theory websites run by mad people, and other such garbage sources. So unless we are careful, we will become a society which is steered not by intellectuals, but by morons or mad people. The Nazis are an example of a society run by mad people. 

 

 

 

 

 

 

 

[Hip]

You mean the guy who broke his own lockdown rules to go cheat on his wife?

 

And you and all your friends and family followed the pandemic restrictions ruled without once ever cheating?

 

I know lots of people who flouted the rules. The UK general public were terrible rebels against the COVID rules, especially young people. So it's the pot calling the kettle black when the UK public point their finger to politicians breaking rules. Everyone was at it. That's why we had such a high rate of COVID deaths in the UK, compared to the more co-operative nations like Japan and South Korea, where people actually followed the regulations.

 

I followed the rules fairly well myself, as I wanted to avoid COVID, being a vulnerable person with ME/CFS. Unfortunately in April this year I caught COVID, and it has made my ME/CFS substantially worse, plus it worsened my comorbid depression. I've lost significant cognitive abilities since catching COVID, and I lost motivation, and don't seem to care much for anything now. I caught it because my family gave up all the precautions and COVID testing, and so got infected in my own home. 

 

In a survey, lots of ME/CFS patients were found to get worse after COVID. I even know one ME/CFS patient who was not too bad, but after COVID got so much worse that he may now require intravenous nutrition for the rest of his life, rather than eating meals, because he is struggling to digest food. 

Edited by Hip, 12 December 2022 - 09:53 PM.