Please stop with all the negativity!!!!

[Undisclosed]

The atmosphere on Pheonix Rising, within the IOM forum, has become somewhat unfriendly and tense since the release of the IOM report.

Here are a few suggestions.

• Please avoid attacking each other and respect that members have different opinions regarding the IOM report. It's possible to disagree with each other without resorting to negative comments that are of a personal nature.

• Accept that members have vastly different viewpoints about the IOM Report and each member is entitled to discuss their thoughts and opinions with the expectation of NOT being personally attacked for having an opinion.

If you are angry at the IOM Report then direct your anger at the IOM report, not at each other.

Due to being short-staffed (as usual), those members that insist on disrupting threads with negative comments directed at other members, or are simply posting inflammatory off-topic comments will be banned from posting on the 'Institute of Medicine (IOM) Government Contract' forum -- indefinitely.

Please report personal attacks and they will be dealt with as soon as possible.

Thank you.

 

[taniaaust1]

Thanks. I guess Ive been lucky as Ive missed seeing any personal attacks involving IOM comments.

I think emotions are running high right now not just due to this but many knew Vanessa. Its a bad time for people all round. Things may be tense for a little while yet.

Thanks for the good job Kina and other mods do here to try to keep things nice.

 

[Sasha]

Thanks, Kina - we don't say enough that we appreciate the work that you and all the mods do to keep Phoenix Rising a safe and civilised place.

 

[anciendaze]

I want to add something here, when you criticize the IOM report do so on the basis of what is in the report, or conspicuously missing. Do not make personal attacks on members of the committee, who did volunteer their time and effort, and recognized that something is seriously wrong, even if the committee as a whole fell short of agreeing on clinical diagnostic criteria.

If the committee failed in their charge to actually define a disease, that should concern those who paid for this exercise. If you don't like the proposed label, you need to check what well-defined entity in the report has the label attached. If you are upset that the news media, and critics of the idea this is a chronic organic disease, got information provided by the committee ahead of patients, say so. Don't go committing fratracide by attacking fellow sufferers.

 

[Roy S]

I just want to add thanks to the moderators for their volunteer work doing a difficult job that is especially difficult right now. We have most of the hardest issues at play now, including the disease definition, the disease name, the long history of government screwups, and another patient advocate putting themselves out of their misery.

Just trying to keep up with reading what is going on is causing me brain overexertion... whatchamacallit.

Excessive infighting has been a big problem in advocacy from the beginnings of advocacy 30 years ago. I hope everyone can try to moderate themselves and try to work together better during this difficult period. The P2P final report coming up is not likely to make things any easier.

Sorry if this sounds like I'm lecturing, but we do have enemies, and it's sort of like giving aid and comfort to the enemies to fight too much amongst ourselves.
　
　

 

[eafw]

I want to add something here, when you criticize the IOM report do so on the basis of what is in the report, or conspicuously missing. Do not make personal attacks on members of the committee, who did volunteer their time and effort, and recognized that something is seriously wrong

Yes, unfortunately people have fallen into the trap of "shoot the messenger" - before even hearing what the messenger has to say !

It is not the IOM who have been witholding funding for research into our condition (in fact they point out that more research is something that is urgently needed). And it is not the IOM who have been treating us with contempt all these years. With a few exceptions it is the medical profession as a whole, the public and the media who need to hang their heads in shame.

If people read the report they would understand that this IOM committee are not antagonistic to us at all, and honestly do not deserve some of the opprobrium that is heading their way.

 

[Undisclosed]

The staff at Phoenix Rising have been working very hard to keep the forums a safe place especially since the release of the IOM report which resulted in emotions running high. In that process, we have had to ask some members to stop hijacking threads with off-topic posts, attacking other members for having an opinion that they don't agree with ... -- well basically it's about respect and not breaking our rules. Members have done a great job over the past few week because we have had fewer and fewer moderation issues.

I would like to bring a little bit of negativity to the forefront because it's related to lies being told about myself and Phoenix Rising that I feel I want to address. This came from a FaceBook page.

We have been reliably informed that Phoenix Rising are monitoring our criticism in the Alliance and their associated Facebook groups, of the IOM report on SEID.

Phoenix Rising is doing no such thing. Members have different opinions and views and simply trying to discuss them and make sense of things. All views are allowed and should be discussed as long as our rules are adhered to. To note I did not get this information from a FB page, I found it on another forum which quoted the Facebook page.

... in a nutshell, one if their top admins has sent a message to one of our members that was intended to silence them from criticising the IOM process and their SEID proposals. They have also said that they are are monitoring our groups for anti SEID posts & comments and do NOT approve of our opinions"

In a nutshell, that's BS.

I sent a message to ask this person to please stop hijacking threads, to stop breaching the rules etc. I did not, and nor would I ever tell any member on Phoenix Rising that they couldn't criticize the IOM and their SEID proposals. I did ask that they post on appropriate threads rather than hijacking threads. I did not tell this person that I was monitoring their groups for anti-SEID posts and comments and that I did not approve of their opinions. I don't even have time to keep up with threads about the IOM on Phoenix Rising and I have no time to read FB pages. I have, in the past read some really nasty comments/lies about Phoenix Rising and myself from this person and that's what I commented on to the person (that I have seen these comments IN THE PAST).

I don't know why people feel it's necessary to go to such lengths to try to destroy the community that is Phoenix Rising. I think the best conversations about the IOM are here. It's meant to be a place to share opinions, discuss opinions and when people don't like this they seem to go to extraordinary lengths to silence people who want to discuss things rationally. Can we not just have a conversation about the IOM without resorting such negativity.

 

[Sushi]

This came from a FaceBook page.

They have also said that they are are monitoring our groups for anti SEID posts & comments and do NOT approve of our opinions"

I don't even have time to keep up with threads about the IOM on Phoenix Rising and I have no time to read FB pages.

Well, that goes for me too--so that kind of covers the possibilities for Phoenix Rising moderators "monitoring" groups on Facebook for "anti SEID posts & comments" !

 

[snowathlete]

Thanks @Kina and @Sushi for the crap you put up with on member's behalf.

I think people here all recognise that those comments on that page are total nonsense, as is the crap they sometimes come out with about Phoenix Rising in general. They are either having paranoid delusions, or they are knowingly making up lies because their modus operandi is to try and cause trouble and disharmony.

 

[barbc56]

You guys don't deserve this. You voluntarily put a lot of your own time and effort into your work here on PR.

So sad and sorry you have had to go through this.

Barb

 

[Sean]

Moderating is a mostly thankless task.

Count me among those who have no time or energy to even read other patient sites or forums, let alone monitor or sabotage them. I can't even keep up with PR, and have to be increasingly selective about how much I read here.

Occasionally I read something linked to from PR, like an MEA article or Cort's blog, but that is about it.

 

[Sasha]

So sorry you're on the receiving end of this kind of nonsense, @Kina.

If people are having to lie about you (and us) then they know that they don't have any genuine basis for complaint.

I think we can all recognise that some people have been way over the mark lately and I'm really, really grateful that you and the other mods are here to keep things safe and civil.

Our community has enough genuine battles to deal with without fighting among ourselves. There's a lot of positive energy here on PR. Let's put it to good use in the coming months and start leveraging the IOM report to our advantage.

 

[Bob]

Sorry you have to experience that childish nonsense, Kina. To spread stupid stories and lies about Phoenix Rising does all members a disservice. This is a grown-up forum, that uses a set of rules in order to keep the peace and to stop bullying and harassment. The rules apply to everyone equally. I've been moderated from time to time when in the middle of heated debate, and I welcome it because that's what keeps the forum safe for everyone. The rules keep the forum safe for the vast majority of members who don't set out to cause disruption. We use Phoenix Rising because it's a safe and open environment, with wide ranging discussions. Members know this, of course, and that's why we're here.

 

[Vitalic]

What do you expect, it's Facebook. Most of the people are on there are infantile. These little groups or cliqués people form are remindful of playground antics, if you want to express your viewpoint do it in an open, public forum, where your views can be critiqued and you can be exposed to evidence which challenges your own opinion.