Corona Virus on this forum

[desquinn]

19/03/2020: A General version of this message has been put on our website and will be the main page where we update information about fibromyalgia and coronavirus. As new information comes to light it will be put there first and linked to from our communications on all channels.

We will expand it to have links or sections on distraction activities like keeping active and any benefits info for example as things progress.

It is available at fmauk.org/coronavirus

---- Original message below ---

Let me start by acknowledging fully that Corona Virus and the disease covid-19 are quite possibly the most important and immediate health issues we have ever seen.

It is wholly understandable that everyone needs and wants to ask for help, to discuss, to consider everything about the issues.

However, on this fibromyalgia forum, if we allow the continuing general Corona Virus discussions, we will see them drown out everything to do with fibro.

Further, there is no knowledge or experience here which is in any way deeper or more helpful than appears elsewhere. Also items that are being pasted here from Facebook and elsewhere are often incorrect or even worse dangerously so.

If there were no other forums then it might possibly be something we have to accept. But there are at least thousands of possibilities including most newspapers, many existing forums and, I suspect, some new ones will be appearing.

May I suggest that we avoid discussion of Corona Virus other than specifically in relation to fibromyalgia?

Discussions about holidays seems not to be related to our condition, as are stockpiling and while a laugh is appreciated from time to time the humour or any single topic cannot overwhelm what this forum is here for.

Please post on existing discussions and do not start new ones as there have been many. Admin team is a bit depleted at present so will be removing with very little notification.

General NHS/ GOV Covid-19 advice - nhs.uk/conditions/coronavir...

Coronavirus (COVID-19): UK government response - Main hub page for this event :-

gov.uk/government/topical-e...

Panic does not help things. Please try keep up to date with official sources.

FMA UK Chair

Des

ps Fibro is not an autoimmune condition and on the basis of fibro you are not more at risk of this new virus than someone without fibro. Please check current government advice about whether you should self isolate or not.

This post may also be of interest: healthunlocked.com/fibromya...

Benefits Info: express.co.uk/finance/perso...

Social Distancing: gov.uk/government/publicati...

this shows the at risk groups and does not mention fibro.

[Dizzytwo]

Thank you for this post I'm sure many would agree with what you have said. I know I for one whole heartedly agree.

Peopl who are seriously posting for fibro help and information maybe getting lost or ignored amongst all the other stuff. Been posted especially has you pointed out things like other posts and jokes from FB.

I hope the forum can now get back on track and everyone as a wonderful weekend and stays well 🤗😘

Momo

[bobbybobb]

I must admit I am guilty of getting caught up in the news of it all but I'm like that with and big event happening. I hope I haven't ignored other post, I try to read everything. I think the things happening do cause extra stress for people with Fibromyalgia because it's all the extra energy it takes looking for things that are flying off shelves. All the stress it is causing if they have hospital appointments, holidays and such. For people like us, all these things can be extremely draining and I know there has been a lot of talk about it on the site but people have felt less alone and part of a community with similar fears about the current situation but of course we should try and get back on track. x

[kejusa]

Thank you for putting some rationale into this, so many of us are confused because Fibromyalgia can hide many other issues, as I have discovered.

[johnsmith]

I have noticed that one of my posts to "Science" journal has been deleted. Thanks for providing the explanation. I take your point and accept it.

[Cape_Cod_Sharon in reply to johnsmith]

one or two of mine had responses turned off and I did not know why....now I know.

[Hidden]

Exactly. Worth reminding us indeed thanks Desquinn

[Banditqueen]

Yes I agree. You get caught in a question from people. I know someone may be worried but there are bigger concerns on specific conditions that are there regardless of c 19.

Try not to panic and keep as well as possible.

[desquinn Partner Volunteer FMAUK Trustee]

On the idea of posts going on, the issue was the rate of new posts and the lack of focus. As to proportionality this disease is different than flu but is less lethal but we will see how it develops. There are many sharing things elsewhere that are alarmist, incorrect, and in some cases potentially dangerous.

If people are following advice then they are not burying their heads. There will be variations in the advice and it will develop over time so we need to keep an eye on the official guidance.

[carol789 in reply to desquinn]

Is it less lethal? Why all the fuss then?

[desquinn Partner Volunteer FMAUK Trustee in reply to carol789]

its less than 1% of people that get it. Sars was 12-14% I think that got it.

But with Covid the amount of people that can get it is higher as it is easier to spread. So numbers can be large because of it. And then if the NHS is overloaded then the incidental deaths will rise as people cannot get into ICU as there are not enough beds or people.

Prevention is better..........

[desquinn Partner Volunteer FMAUK Trustee]

It may not be the best advice..... no way to know that until after it has all passed us by. But not being the best does not mean it is not good and helpful advice.

Many of the effects that are going to have negative impacts on people's life are because of people overreacting like we see with the shops. We need to carry on as much as normal as possible.

[Banditqueen]

I have bigger concerns. Other people have bigger personal circumstances and concerns. I have two people in hospital, one critical. I am more concerned about them than if the school closed or not. I think people need to be aware, take precautions, follow the right advice and we can look out for each other.

This really isn't a c 19 forum. It shouldn't be used for that. If people have a concern about their more complex long term conditions and how its affected I believe that's o.k. I have to agree with the site owners. People are concerned about how it may affect long term people who are vulnerable not asking about loo paper.😂

[LotiRamjet]

I wish the site could add a Covid-19 forum where we could post.

[desquinn Partner Volunteer FMAUK Trustee in reply to LotiRamjet]

so do I but I would hate to be an admin on it

[LotiRamjet in reply to desquinn]

Truly!

[Cape_Cod_Sharon]

That is a very good point My dexter.

Perhaps a thread strictly for those who DO wish to talk about their concern/fear/anxiety over covid-19 would be both appropriate and responsible.

CCSharon

[desquinn Partner Volunteer FMAUK Trustee]

I have been extremely stretched of late and our admin team is very light handed at present so not idea. But If we had one general post then that would be okay. But we had a situation where almost all the posts on the newsfeed were about it and not all of them were of any real note and certainly not related to fibro.

[Hidden]

Thank you for answering my question. Much appreciated. 😀

[carol789]

Hi Everyone, PLEASE PLEAE BE KIND people are worried about the effect this will have on them. I would love to know if any extra risks to us having Fibro and Chronic Fatigue. I can se a post on here that says its not an autoimmune disease (even though I have tested positive for autoimmune but tested for a few and then left specialist left it at fibro) and will this and the fact thast we are in no more danger than others who will catch the virus affect PIP assessments going forward? The assessors already don't need any more ammunition to decline applications (no I work and don't claim PIP just asking for others) I as many others am worried, as when I get ill, does not matter from what, I take longer than others to recover, I presume this is the same for friends on here? so, even though we are not "at any more risk than others" It would be great to know. The links provided to the NHS are welcome honestly, however, they do take me away from this forum as I am redirected, not sure if anyone else is? Why I am worried is that I have a head cold, sniffles and headache and feel like my lungs are burning, I do have stomach ulcers and this is a symptom and they may be flaring up again but it is still a worry. That is what I come on here for, to chat about what is worrying me with regards to my Fibro Myalgia and I notice admin don't really want us to talk a lot about the virus as it detracts from other queries Fibro sufferers may have, however, this is the area I and a few others on here are at the moment are worried about. I am working from home at the moment, but do worry as to what to expect if I do get it. I had the Flu before Christmas and trust me, that was hard to get over! Now either it is something to worry about (perhaps as a few countries have closed down this is a clue giver) or it's nothing to worry about! confused.com much. My sickness record is not the best so very worried. Sorry long post and a winge - Not feeling too great!

[desquinn Partner Volunteer FMAUK Trustee]

so 4% of diagnosed cases but there are so many people that are either not diagnosed or without symptoms. Stats always need context.

[Cape_Cod_Sharon]

worldometers is my go to for covid-19 updates, they have the best, most current statistics

[Sarahvit]

Thank you for this post it answers some of my questions. I have seen posts that some were related to the COVID-19 virus 🦠and had only a few comments under the post then the ability to post was turned off before I get out of bed in the morning or to my emails before I had a chance to put in my 2cents. So this makes sense. My only on going relief joke is the whole hoarding of toilet paper🧻. Why do people feel they need to buy up all the toilet paper. This is a respiratory virus not a GI virus. Use common sense and only buy what you will normally use in a month period NOT A YEAR period. It is ridiculous for a store to sell out of TP within 1hr! I have been to several different stores at various times and each time the TP shelves were empty. I have never seen anything like this before. Thank you for allowing me to vent and listening.