Totally Fed Up - Part 2: MrsNails I am so... - PMRGCAuk

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Totally Fed Up - Part 2

MrsNails

I am so disappointed that you did not read the whole of this thread thoroughly. If you had done, you would have seen that the complex medical history is mine, not reallyfedup123 to whom you replied by name.

Complex medical histories are a part of life. It is unthinkable that we cannot consider a discussion of a particular condition because there are overlapping factors with other conditions - or indeed because the OP has a complex medical history.

I am rather perplexed too as to why one moderator has been a part - albeit small - of the thread and has seen no reason to comment in the tone you have used or to turn off the post. Is there a hierarchy of moderators in this forum?

I sincerely hope that no member of this forum ever has to use another HU forum because they have queries about a condition other than PMR/GCA. However, if they do I’m sure that they will be treated with considerably more courtesy than that which you have shown to me.

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It was an interesting thread. But it did drift a bit. Particularly the ‘cure your own cancer’ reference, which is way out of the remit of this PMRGCA forum.

I expect MrsN just happened to be the mod ‘on duty ‘ (as in just happened to be online in their voluntary capacity) and maybe (guessing here) the above mentioned post was reported by members?

All threads are welcomed if they pertain to PMRGCA, with or without complicating co-morbities. But I know that there are concerns that urgent posts might get lost on the page if it’s filled with ‘other stuff’. So don’t be surprised if this thread also gets locked. But stick around, as MrsN said, ask any questions and air any worries.

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All I can say is that if the Thyroid forum were to take this attitude if posts ‘drifted’ or went ‘off topic’ then it would probably cease to exist. It is a truly excellent forum.

Illnesses and medical conditions cannot be compartmentalised.

I am simply dismayed by all of this. Judging by the number of people now following this, I don’t think I am alone.

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I can’t comment on the thyroid forum as not a member.

And this forum isn’t showing any signs of ceasing to exist, even with the guidelines not to be too tangential and to keep things relevant to PMR&GCA.

Here are the guidelines, points 3 & 11 are pertinent to the first thread healthunlocked.com/pmrgcauk...

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Given the frequency with which pmr is misdiagnosed as Fibromyalgia and, moreover, the links between hypothyroidism and fibromyalgia, there were no ‘off topic’ subjects in this thread.

I appreciate that the post about cancer treatment was contentious. Removing that should have been sufficient. Closing the thread was not necessary.

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Links between hypoT and fibro are more suited to thyroid +/or fibro forums. That is the point.

Closing the thread was a mod decision and I have no gripe with that. It is what it is. Stressing about it is not good for any of us.

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I accept that Soraya - but this arose because of earlier post about differential diagnoses: Fibro / PMR. There is so much evidence both anecdotal and research based. Folks are diagnosed with PMR with normal or low inflammatory markers; others are diagnosed with fibro with high markers. It is not unusual to have diagnoses overturned when other symptoms appear.

The point I’m trying to make - not very well obviously -.is that misdiagnosis is a huge problem with PMR. I responded well to steroids given to me by GP but Rheumi was more interested in the fibro ‘trigger points’.

I was hoping to hear from people who’d been misdiagnosed. The offending post was not mine. Yes. I am stressed.

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I do understand, shall we move on? Start another thread with that ^ specific question.

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Might be a good idea. 😊

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The impression I get is that the thyroid forum does take a similar attitude. And I can assure you - this forum has plenty to deal with without diverging into totally non-PMRGCAuk discussions.

These forums are the public face of national charities with medically recognised connections. As such there are limits to what can be accepted and "cure your own cancer" is far from that I think.

I "joined in" before the discussion changed. I would have acted the same way.

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💜🙏🏽💜

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How not to bury a contentious thread which so many have worked hard to put right. That includes MrsN as well as other members 🙄

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Hi,

Whilst I appreciate that you have complex health issues and therefore are not in the best place, I consider your comments regarding one of the hard working and voluntary Moderators is out of order.

If your comments have been reported (as they may have been) then the duty Moderator has a responsibility to take the appropriate action. That is laid down in their terms and conditions.

If you take exception to their actions/comments then the appropriate action is to contact one of the forum/charity’s administrators - details of which can be found under “Members” above.

That would have been much more courteous than a personal attack on the open forum.

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Have done so.

Moderators - be they this one or any other - have a responsibility to use reasoned judgement. Their hard work is not in question.

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Fine, so why post on here as well?

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I can't believe there is a forum that we can ask virtually anything regarding PMR or GCA and get probably the best answer technology has to offer. There are also lots of experience with these diseases. These people moderating seem so professional and experienced, I can't believe people question any action they decide to take. They could easily charge hundreds of US dollars to provide this service in the US.

If their opinion that things have gone beyond the scope of the forum, so be it.

People that sit back and nit pick any decision is made by these moderators should just take a "chill pill".

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Can’t access this link. Maybe because not a member of ThyroidUK forum.

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That's should work now. Needed new line.

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From posters profile

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Context very different

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The initial message being managed was not down to your initial contribution and the people who contributed to the thread gave up their time and energy to answer your questions. But if someone makes claims for treatments of conditions not part of the pmrgcauk remit. Or indeed don't fit within healthunlocked general guidelines then the forums are within their right to make a judgement call. If your part had been the problem then I am sure the whole thread would have been deleted. In the end your public response and it's tone and manner has lead to others using up time to respond to allegations that we lack courtesy and by implication understanding and compassion for people with multiple conditions. Now I am going to participate in the forum.🤐

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As moderators of the forum we do certain days on duty but I can assure you that no matter which one of us was moderating the site we would all have come to the same decision mrsnails did and have taken the same action.

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I’m glad there is consistency. I just wish that the offending post - not by me - had been removed and the thread allowed to continue.

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Scrumbler, l will reopen your Post, it was you l was attempting to protect, hence my personal message.

We have to be vigilant at all times & we work behind the scenes to ensure all information is trustworthy.

My apologies if l upset you, it was not my intention & it can be easily rectified but my first concern is always the safety of all our Members.

MrsN

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MrsNails

Please don’t worry about it - and thanks again for your thoughtful posts of the last few minutes.

Thank you

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Dear Scrumbler

I am sorry you found my decision & response unacceptable. I’m afraid that recommendations to Cure Your Own Cancer are not acceptable here on PMRGCAUK.

I did not read your Post & Replies until today when l returned as the Days Moderator & the Reply was brought to my attention by another Member.

It was following that l made my decision. I can reopen Replies again to your first Post if you would like me to, my initial thoughts were to protect anyone from seeking unconventional treatment.

MrsNails

Moderator

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Thank you so much MrsNails. I really appreciate your thoughtfulness in posting this in these terms.

At no point would I uphold anyone posting about unconventional treatment. I would have expected you to remove that post / but not close the thread. This upset me.

As this has now degenerated into a slanging match I can see little point in reopening replies.

Thank you again for seeing things from my point of view and not jumping on the bandwagon.

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There's no bandwagon scrumbler. Like I said your initial post was fine and I contributed to it. It wasn't your role that was the problem.

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I know. How did all this happen? I feel totally stressed - and I don’t need a responder to suggest I ‘chill’.

Thank you for your kind words.

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As l explained further down in this post, l wanted to protect you initially & then any other members with similar issue.

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Thank you for that MrsN. Think I’m going to watch some mindless TV and eat chocolate 😉

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Enjoy 📺 🍫

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Thank you for keeping the forum about the forum. Also, thank you for keeping bad information out as much as possible. I use this forum and the RA forum for RA and PMR as I have both. I need to hear from others who suffer with these things which are trying to destroy my body.

Usually, I don't have to weed out much junk to get to the truth, on here. This is why the forum will always have me checking the posts.

As an aside, scientists who are trying to find answers and cures to diseases try to isolate the individual diseases so that they can figure out what causes a specific problem. There's no such thing as looking at 3 or 4 at once.

So, on a personal note, am tapering today 1 mg, from 20 to 19 of pred. Hope it works this time.

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Differential diagnoses are an essential part of the study of disease and its symptomology. "Looking at 3 or 4 at once" is sometimes an essential part of that process

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Check this paper - Complex Diseases: Research and Applications from the site: nature.com and it will (as many others also) help you to understand that what I said is true about research. Actually, any research paper will show how every variable is weeded out so they can get target something specific with a specific item.

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Chronic pain and iffy diagnoses can make us all edgy. Glad this blowup is settling down, and misunderstandings clearing up.

PMRGCAuk is where we come for some positive information, e-hugs and support. Discord is so uncommon on here. Thanks volunteer mods and members who make valuable contributions.

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Thank you for those conciliatory words.

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Gosh my head is spinning trying to get to grips with all this.Time to move forward me think's,and restore peace and harmony to all.Let us smile feel loved, we have so much to contend with every day ,deep breathing relax,oh that feels better now.Mmm time for tea an cake happy 😊xx

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