Using This Forum: The Parkinson's... - Parkinson's Movement

Parkinson's Movement
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Using This Forum

CPT_Helen
CPT_HelenAdministrator

The Parkinson's Movement community is blessed with an abundance of highly intelligent and well-informed participants. Many participants have a high degree of experience and expertise on various aspects of the Parkinson's challenge. The community provides a place for people with Parkinson’s around the world to come together and support each other. We know that connecting with others can be of great help in coping with Parkinson’s. We want to ensure that the discussion pages are being used in the best possible way.

Please take a few minutes to familiarise yourself with our Code of Conduct below (and always available on the home page pinned to the menu on the right hand side)

parkinsonsmovement.com/foru...

We ask that all members:

•Are respectful of others

•Communicate with empathy - other people have feelings too

•Strive to improve the discussion

Please note we have removed two recent discussions as they did not reflect any of the principles that underpin this forum.

34 Replies
oldestnewest

Thank you !

I appreciate your point but be aware that it changes the participation in a forum when trolls and conspiracy theorists are allowed to dominate unchallenged. The more expert who properly understand the science weary of fruitless groundhog day debates with those who make unsubstantiated assertions about "novel" alternatives, and the average reader loses a critical balance.

I used to participate enthusiastically on a HiFi forum but haven't looked at it in 3 years now. I once ran a well known innovative HiFi company and remain close friends with the founder (who is the holder of several patents, and still producing innovative designs). I am also close friends with another designer and multi-patent holder who has recently designed some revolutionary amplifiers. I tried to get him to participate in the forum when a discussion started about using balanced power supplies (which effectively remove essential earth/ground protection from class I devices connected to them, but can help with earth loop hum problems, and were being given fictional magic properties) on the basis this was life threatening and his expertise would carry authority. "I'm not responsible for stupid people killing themselves" was his response. Not because he is callous and uncaring, but because he knows he knows what he is talking about and has no time to engage with "enthusiasts" trying to persuade him ohms law might not work, but will engage him in endless debates.

2 more friends, speaker designers for major international firms, similarly avoided the forums, and asked not to be identified or quoted. I eventually wearied of discussions about how the direction in which a mains cable was connected, and the sort of wall plug used made an earth-shattering difference to the music, and lost interest. The final straw was dangerous nonsense being talked about earth/grounding in domestic installations.

I am just starting to get similar trench fatigue here. And I detect others are too.

This forum is very important, especially to people that are just starting to face the Parkinson's challenge. Outgrowing and changing is not bad, when the time comes.....

We all have auto-filtering system in us that allows to be selective in the threads we participate in

Simply avoid those threads or tell your friends to avoid those threads were they feel people are chatting nonsense and given that those contentious posts only add up to a tiny fraction of the total posts here, I don't see what the problem is

No more than a tiny fraction of posts is like what you described because there are so many very smart people around here... maybe your friends had other reasons... such as lack of time

While I agree that there should be zero tolerance towards scam posts, there are many reasons why censoring and clamping down on posts like the one you described is a very bad idea. To mention just a couple...

1. Many great tech ideas in use today were initially described as stupid and crazy by experts. Such as Nikola Tesla's innovative inventions, ideas and proposals. He was a hundred years ahead of his time. When he first proposed the AC method of generating electricity, industry experts described it as dangerous and unworkable

2. Your view point is subjective to your perspective,... just like in politics if you are on the RIGHT you think everything and everyone on the LEFT is evil and likewise if you're on the LEFT you think everything on the RIGHT is evil.... To have a genuinely neutral perspective is hard but it starts with giving every view a fair chance

3. Genuinely stupid ideas would die a natural death or become a laughing stock just like the FLAT EARTHERS

But there's a lot more to say on why censorship is very bad- I just don't have the time to treat them all

Horace99
Horace99
in reply to Grumpy77

Day-zero skunk-works style innovative ideas have their place, but this is a 𝗛𝗲𝗮𝗹𝘁𝗵 forum. The rules of this website provide (amongst other things), for reasons that incredibly valid and ought to be overwhelmingly obvious, that:

___________________

- contributions must be accurate (where they state facts).

- contributions must not be threatening, abuse or invade another’s privacy, or cause annoyance, inconvenience or needless anxiety.

- contributions must not be be likely to harass, upset, embarrass alarm or annoy any other person.

____________________

So no, you do not have unlimited scope to distribute ideas on this forum simply because they have popped into your head and Einstein or Tesla were ridiculed.

There are numerous places on the internet where corporate conspiracy theories and wild and risky experimental medical treatments can be discussed. Those places will have different rules to this place, because they are discussing different things.

Critically, people that go to those places go there knowing what they are in for. People should not have to come to a health website with a guard up that needs to filter out 1 out of 4 posts becuase the moderation level is set at anything-goes level.

Grumpy77
Grumpy77
in reply to Horace99

Just like I did yesterday, I will advise that you read my post again, this time read carefully- nothing that I wrote- posting suggestions, principles or method of behavior- broke HU rules or supports conspiracy theories

Horace99
Horace99
in reply to Grumpy77

I have read your post. There is nothing complex about it.

1. This forum may indeed be a breeding ground for bleeding edge ideas that would make famous scientists proud but again, there is a prohibition against factual misstatements and various other things. I have no idea how conspiracy theory threads would ever advance science, but it's irrelevant anyway.

2. The left and right are welcome to their own perspectives and opinions. They are not entitled to their own facts.

3. the posting of claims that are analogous to those of 'flat earthers' would literally be in breach of the HU rules, regardless of how comfortable you are filtering out the noise.

Grumpy77
Grumpy77
in reply to Horace99

If my post breaks HU rules in your opinion then you can go ahead and report it, that I'm telling people to break HU rules

Horace99
Horace99
in reply to Grumpy77

I never said you broke the rules. I said that the things that you seem to think are acceptable are likely to break the rules if they are posted.

Grumpy77
Grumpy77
in reply to Horace99

No

For example Dr constini HDT protocol is not yet accepted by mainstream medics and neurologists but it works for so many people including me

Horace99
Horace99
in reply to Grumpy77

No one here is talking about B1 threads 🤦‍♂️

There has clearly been at least one long thread (with like 200 posts) that you are not aware of that was (eventually, and not before causing several posters angst) deleted and I believe that is likely what WTP is referring to. No one has an issue with vitamin or supplement experiences being shared here so long as, again, they are communicated in accordance with the rules.

bepo
bepo
in reply to Horace99

If you haven't heard of a therapy helpful to PD, does that mean it doesn't exist?

When someone posts a subject do they need to show all the supporting documents about why they believe that is true and effective? No. I don't believe so. The person who posts perhaps is challenging others to research topics that might be new to them. This disease is so complex. Everyone who has PD is the only person who has that form of PD. No one else is the same. Therefore, each person might need to be treated individually.

So, what do you know about ozone saunas, PEMF mats, near and far infrared therapies. If you don't know about them, does that mean they aren't valid and don't work for some PD patients.? Our MD and other MD's utilize all the above therapies....that work for various diseases. Why not Parkinson's?

LAJ12345
LAJ12345
in reply to Horace99

Oh now I am intrigued? Did I miss it?

But censorship hurts all and is the same sort of crowd behavior and schoolyard pc that shuts off real information opportunities, which is foolhardy. If all you want is PC support of phony oversensitivity, the value for actual grownups seeking serious support and value worth their time is diminished to the point of uncompetitive waste, as well as blaming the victims rather than the true bullies.

Beware intolerant censorship and over-projecting one's own inappropriare or excessive and reactive hyper-sensitivities, they produce real loss as opposed to "I'm so sensitive so now I can bite in injure you and coerce others to shut up and shun you like gangland and schoolyard bully tribes, and get up a primitive gang to do it too." Don't become One of William Golding's youngsters.

What is protected by these rules is the freedom of expression, even of opinions, which by definition may or may not be based on facts. It is an often underestimated value. There is no use in science without freedom of expression, as recent events in China teach where the denunciation of the heroic doctor Li Wenliang has been censored by the authorities. In the UK, which has never had gestapo or stasis,and where freedom of expression is protected, this would never have happened and thousands of people would still be alive. There is no conflict between science and freedom of expression, they go hand in hand.

Horace99
Horace99
in reply to GioCas

Nowhere in either the PM rules or the HU rules is 'freedom of expression' provided for.

The HU terms of use (this is an extract) provide for the following:

___________________________

Your contributions must:

1. be accurate (where they state facts);

2. be genuinely held (where they state opinions); and

3. comply with applicable law in the UK and in any country from which they are posted.

___________________________

So inaccurate factual statements are prohibited.

Additionally, the report post feature provides the following options:

____________________________

Inappropriate behavior

Offensive, abusive, trolling

Spam

Promotions, links, fake accounts

Potentially dangerous advice

Poor info that could cause harm

Underage user

Under 16 years old

Self-harm

Self-injury or suicide

Other

____________________________

Advising people to abandon traditional treatment in favour of 'ozone therapy' is dangerous.

Appropriate: perhaps ask your oncologist about ozone therapy?

Absolutely 100% innapropriate, per the HU rules: your oncologist is part of the big pharma conspiracy. They know about ozone but dont recommend it because there is no money to be made in it.

You are entitled to your own opinions. You are not entitled to your own facts. Posting inaccurate factual statements is a clear breach of the HU terms and conditions, regardless of what the PM terms and conditions say or how you feel about freedom of expression and its relationship with science.

There is a reason that representations of fact should be accurate per the terms of use and that is this: this is health website. People's health and consequently their lives are literally impacted by what is written here.

If I start a thread saying that i have heard that small doses of arsenic stop the progression of PD, is that ok with you? Surely, right, because I have freedom of expression, right?

Or maybe not, because that would be clearly dangerous?

GioCas
GioCas
in reply to Horace99

OK! I got it. You can be right 🤪

ParlePark
ParlePark
in reply to Despe

For whatever it is worth... en.m.wikipedia.org/wiki/Ozo... Another perspective if not already mentioned.

Despe
Despe
in reply to ParlePark

Wikipedia, FDA, pharma. Perfect combination to discredit medical doctors who are using it (Dr. Frank Shallenberger). He is not in jail to the best of my knowledge.

ParlePark
ParlePark
in reply to Despe

Despe , Just another perspective. Not attacking or defending article. Found interesting though.

Despe
Despe
in reply to ParlePark

:) Thank you, PerlePark.

GioCas
GioCas
in reply to Horace99

Just to recall the facts here is the link to which Horace refers:

healthunlocked.com/policies...

so everyone can read it in its entirety.

I add the HU PM guidelines:

parkinsonsmovement.com/foru...

MarionP
MarionP
in reply to Horace99

And who is to be the fact checker or determiner of trolling, and to what fact checking shall a self-appointed gendarme of banishment and censorship be first subjected? Who gets to hijack and interpret the rules for us and interpret for themselves, and after the fact, in coincidentally their own favor? Who here is appointed to judge with power to depose? Not any member. Not any member.

Unfortunately the current policy creates absolutely no standards requiring trustworthy behavior or truthful or factual behavior, because that is extremely labor- and expertise-intensive and extremely costly, and many times the answer can itself only be subjective in the first place, or the end, anyway. So who then gets to be self-appointed Jesus H. C***** to baptize and un-baptize? Only the site owners, period...and the is a working complaint process in place for that.

Grumpy77
Grumpy77
in reply to MarionP

Quote: "So who then gets to be self-appointed Jesus H. C***** to baptize and un-baptize?"

🤣🤣🤣

Levod
Levod
in reply to GioCas

Hi GioCas,

i don’t think the current rules or their interpretation by the moderators protect freedom of expression. If you look at CPT_Helen’s 3 bullets near the end of her post, I would suggest that enforcing these things does not protect freedom of expressions... They are too subjective.

I was censored yesterday (a post of mine was deleted) with no explanation given to me, but now I see CPT_Helen post and her 3 subjective bullets it is not too hard for me to see how she could justify/rationalize her deleting my post... Eg, she may have thought my post was disrespectful, or may hurt someone’s feelings, or did not improve the discussion..,

While what I said could be viewed as provocative, may have ruffled some feathers, and hurt some feelings, I feel what I said, expanded the discussion greatly beyond the ”echo chamber” of the thread in which I made my comment...(whoops, is this disrespectful to the other posters in the thread? did I hurt their feelings?)... and it is a discussion worth having...

GioCas
GioCas
in reply to Levod

now I remember your post, but why did you leave? I found your posts interesting, like the one on placebo and all the others on c / L. I understand your point of view and your disagreement, but sooner then everyone happens to have a post deleted rightly or wrongly. I hope that it will be overcome and you will remain among us. thank you for being among us again. 😀😀😀

chartist
chartist
in reply to Levod

I had a post deleted on this forum and while I wasn't thrilled about the deletion, I stuck around because this is a very good forum and I know this from experiences on other forums!

This disease like many diseases sometimes can benefit from outside of the box ideas and for me, I would like to be the one who gets to decide what I would or would not like to read. We all have a brain here and can use it to decide what we are interested in reading or not interested in reading. I don't need anyone else to try and make that decision for me! If everyone sticks to the status quo, how do we grow our knowledge base on this forum??? Free thinking is important and I think it should be encouraged, not stifled, in order to be exposed to new ideas that are not necessarily mainstream. Many people on this forum have reported benefit from many different things that are far from mainstream and many on this forum have also benefited from those reports by other members! I don't want or need anyone else making those decisions for me!

Art

bepo
bepo
in reply to chartist

Wonderfully stated!

MarionP
MarionP
in reply to Levod

Quite right. Imperfect and not around to get and notice the full benefit of conversation except the print, and after the fact, moderators can be as flawed or as wrong and subject to being gang-pressed or "Mom, Joey's touching me, kill him!" errors as any one else. Moderators can't help but be late to the party, after all.

Getting a gang to pummel someone for purely emotional reasons and hijack or weaponize an unsuspecting moderator to do their dirty work is attractive to certain sorts of people, and moderators are certainly as vulnerable to it as anyone else might be. Like I said, some people just can't resist resorting to starting up their own "Lord of the Flies" re-enactment. "Mom, he's looking at me, throw him out of the car! All you other kids, let's all pummel mommy 'til she does it!"

Criticism and examinational challenge is not a personal attack. It is someone testing your assertiin for justifiability, believability, truth. If you can't take a little tire kicking, you are either in for some discomfort or run the risk of harming someone who just might trust you.

Lashing out just for that is destructive, and hopefully a moderator won't be taken in and just be used as a tool against someone who merely provided a flashlight. If you aren't willing to see justification questions and challenges without exploding, maybe you, not the one who catches you, are the one being ulterior. Try not to be that person.

Ref: Games People Play, Eric Berne

CPT_Helen
CPT_HelenAdministrator

thank you for you comments. The posts were deleted yesterday as I had a wave of complaints about the tone and use of language of the whole strand. That sort of discussion and use of language does not help the majority. I would like to reiterate please use this forum respectfully.

Thank you for what you are doing for all the Parkinson's sufferers and their caregivers.

Thank you, Helen! Good job, have no complaints about anyone. I do respect those who don't believe in Alternative Medicine, just as I expect them to respect my believing in Functional Medicine which I believe is a perfect combination.

Arguments about arguments. Thank you for helping me remember why I stopped getting daily updates from HU.

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