I'm sure we're all worrying about this but as they didn't think I was 'vulnerable' enough for a flu jab, I'm wondering if I'm considered vulnerable for this. I'm 60 and had pleurisy over 25 years ago. I also worry about other family members, one who has MS and also my mother who is elderly but very fit. But my main question is in relation to FM and how it might affect us. I do realise the picture is constantly changing and there are a lot of unknowns as yet and that we need to do what we can to protect ourselves as our loved ones but I do worry that people with FM and ME aren't recognised as vulnerable when all I read from people's experiences is that we absolutely are but that public health announcements won't necessarily have us in mind.
Coronavirus - how much of a risk? - Fibromyalgia Acti...
The general advice from NHS still applies. Flu shots are not going to help as the vaccine for it will take 12-18 months. Prevention through washing hands and self isolation if symptomatic is the way to go.
desquinn I know flu vaccines aren't going to help. My post was more about whether we are considered vulnerable
So the public in formation is wrong then - that i out of 4 or 5 people will get the virus seriously. Seeing as FM/ME is wrongly diagnosed in 65% of people and many people actually have weak immune systems like Lupus (I'm being investigated for his) and many people with Lupus as per forums have previously been diagnosed with FM or ME I don't see it's any reason to be complacent
my statement was that we are as vulnerable as everyone else. 20% of cases will be severe with 1% being fatal although this will probably be higher than it is as milder cases will be undercounted. So not getting it is the important thing to take from this as prevents you being in that cohort. So hand washing is important.
You are quoting 65% wrongly diagnosed for FM/ME and I wonder where you are getting that from, do you have a source? And your logic beyond this is not making sense as it is a bit circular and making leaps without foundation.
And the last point about complacency was not what I was aiming at. It was appreciating risk and reinforcing the point that not getting infected should be the main aim for people and this is by following the advice and washing your hands.
"Generally, coronavirus can cause more severe symptoms in people with weakened immune systems, older people, and those with long-term conditions like diabetes, cancer and chronic lung disease."
"And your logic beyond this is not making sense as it is a bit circular and making leaps without foundation."
Please explain and I don't take kindly to being called illogical.
And it was the ME Association (I think and not the ME Trust) who stated that 65% of people with ME are misdiagnosed. Finding the source among my squillions of bookmarks (for someone with brain fog) is an impossible task. But ask them yourself for the source and they will tell you. I questioned them at the time for a breakdown and was given one. As I say it's a question of locating it and I don't have the energy.
But I have been diagnosed with ME so I have to run with that. ME sufferers are known to have a compromised immune system. This is what I was addressing but so far have only heard mention of diabetes and asthma - nothing about autoimmune conditions.
In contrast to your rather dismissive post, the posts in the Lupus forum take this seriously because it is recognised they have an autoimmune illness. Many people with Lupus have also been diagnosed with FM and ME.
I don't come on here often any more but the tone of the admins has certainly changed to one of being less supportive.
I'm well aware of the hand washing advice and the measures to avoid it, FYI
I was not trying to be dismissive or lecture and was genuinely curious of source. But using an ME stat to include fibro patients is not a good connection. Also with the difficulty of diagnosis the probability is that for someone being misdiagnosed there will be another that is undiagnosed.
Fibro is not an autoimmune condition on current research. As to the points without foundation you seem to be wrapping lupus in with fibro and where it can be a differential as do other conditions like thyroid or MS they are not the same or indeed a correct diagnosis in all cases.
As to taking this seriously I ca assure you I am and that's why the facts are important. Irrespective of vulnerability, the avoiding of the virus is the important part. Making people worried about improbabilities is not going to help.
As to your impression of the forum or the admins I can only say sorry that you feel that way. The admin team has changed as it has constantly through its existence but the people on the forum are as supportive as I have known them to be. And the admin team do their best.
Personally I do feel a bit embattled at times as telling people when they break the rules often means the admin team face conflict even when they have not got the time or the motivation. But when you are just trying to answer a question or address a pont like a normal member misunderstandings like this chafe a bit.
Again sorry for offence but brevity and directness does not mean disrespect.
No worries, it was late last night and apologies too if I came across as not at my best and I do understand what it's like to admin a group as I am an admin on a benefits group on Facebook that has several thousand members. I do get irritated when they don't read the rules even though they are now there to read before they join the group. But it's also recognised that it's difficult for people to keep going back to read the rules if they've been a long time member and so admins have to 'pin' the rules. I wasn't aware that I'd breached any.
I have to say though, I am receiving treatment for ME, and the thinking in the field - certainly where I'm being treated - from people who've been researching and treating ME for years is that ME and FM are probably the same illness but manifest in different ways e.g. one of the many pieces of research in the bumph I was given on first diagnosis was that there's such a high proportion of people who actually have both that they're thinking is it's a continuum with FM at the one end (pain end) and ME on the other (fatigue). Many people won't have been diagnosed with both. For instance I have only recently been diagnosed with ME (and that at my persistence) whereas I was diagnosed with FM ten years ago (again, at my persistence).
You just have to go on any forum in relation to e.g. hypothyroidism, lupus, EDS, SS, Lyme's Disease, MS, Cushings, RA etc etc (some of these autoimmune and some not) - again it is anecdotal - but you will see how difficult the journey has been with many people having been diagnosed with FM almost as the 'default' diagnosis without further investigations. I don't need to stress how underfunded the NHS is nor the difficulties and long time it takes for people to get the correct diagnosis, because of the similarities and overlap of symptoms.
I do think it's a bit over-simplistic therefore to treat each illness as discrete, since many people will have more than one or indeed several. That is, FM doesn't often occur in isolation, but it is often one of many illnesses, some of which have been diagnosed, some not.
I do see your point about including Lupus/other autoimmune diseases and other illnesses but that's because I'm investigating this for myself at the current time as I had an ANA positive result. That's why I do find having discrete forums sometimes not very helpful e.g. there's not one for ME at all (in Health Unlocked) and so naturally this is where people will end up. But I have seen all the other illnesses mentioned above also mentioned in this forum at some stage and so there will be many here who have autoimmune illnesses, ergo we are a mixed community.
not a problem. My comment about rules was just a reflection of being on here as an admin and a user and not directed at you in any specific way.
I would not agree with the definition that ME and fibro are on the same continuum as there are a few issues with this theory and it has not been confirmed. However it is a way of explaining how they relate to each other in a symptomatic way as opposed to an aetiological way. There are a lot of people that only have fibro as their diagnosis and the make up of our population is quite complex like the population in general.
also there is an ME community on HU and you can find it here: healthunlocked.com/meandcfs...
Thanks for the link to the ME community - strange that I have searched for one before in the list of communities and it's not showed up.
Yes, the ME/FM continuum or being part of the same illness is not proven, but then little is when it comes to ME/FM. These are people with considerable expertise but the information did say they are 'likely' to be part of the same condition which I accept isn't fact. But theories begin as theories and there are years of painstaking trials and research until these are proved or disproved. However there are many groups e.g. on Facebook for both conditions in the same group since so many people have both or may not have the other diagnosed which was the case with me until last year, even though I knew I had ME long before that. So I don't think that just because people only have one diagnosis means they don't have the other. We would only know for certain if all those people with FM had been told they didn't meet the criteria for an ME diagnosis. I think the problem is because of the different specialties who have historically been used to diagnose one and not the other: i.e. rheumatology for FM and neurology for ME
Looks like the research was small samples and only a couple of studies. The percentage was less i.e 40 to 46%.
Yes, I'm not sure if that's the research I was directed to. It was on the Facebook ME Association site where someone came up with the figures of 65% misdiagnosis and I remember asking for a breakdown of that the actual diagnoses were and eventually I was given them. As I say, trying to locate them again, especially if in a FB message is a bit too much for a foggy brain
i am personally not concerned about the Coronavirus, in some ways it is very authentic, but the media are sensationalising things to trigger panic. i have naturally a very low immune system due to past illnesses making me more likely alongside others with low immunity to catch these viruses. people are panic buying in supermarkets, it is rather unnecessary as panic buying is just making things so much worse. i am not scared or worried about the virus, at the end of the day if we are destined to catch it, then we are. the usual hygiene common sense approach wins every time
To put things into context far more are dieing from flu around the world at the moment. Yes it is a new virus and people do not have any immunity from it . The realty is the death rate from catching it is very small. Those with just fibromyalgia and no other conditions have little to worry about. I am not belittling fibromyalgia in any way it is a horrible condition. Personally I do have concerns as I also have emphysema. Sadly for me it people who have existing lung conditions that make up most of the deaths or the frail elderly.
Do you mean you were you off due to self-isolating to protect yourself from the virus? It's so difficult because although presumably there are fewer children at school, it will still be hard to socially distance. Presumably too they need fewer teachers and other staff so I would hope that they would understand your need to stay away. I can feel the quandary you're in and hopefully there's some sort of support or guidance although at the moment everyone seems to be feeling their way. But your health has to come first and if you have FM and a bad immune system you could be on SSP even before this if it affects your ability to work. Best wishes and stay safe. x
Thanks so much for replying, I have been off since thursday due to developing a cough. I have to be back after 14 days. They are saying FM is not on the list for social distancing. There are very few children in school, just worried because they are children of NHS staff workers etc. Many of my colleagues are off through social distancing.
Hi AND1976 I know they've written to the most serious cases and specified them for self-isolating for 12 weeks but I'm not sure what they mean 'not on the list' for social distancing. I thought we were all having to social distance now and that would include not just the highest risk (who have all been written to) but those who nevertheless have pre-existing conditions and are vulnerable and you mention a poor immune system. They just can't be sure how people will react. For ME they say it is well known that viruses knock people out (and many people developed ME as a result of having certain viruses years before). I tend to err on the side of caution as I'd rather do that than be sorry as I'm sure you would be. I hope it's not a case of them not being able to get past the FM label as so many people are sniffy about it - I have someone in my family who doesn't see me as vulnerable at all Maybe best to talk about having an autoimmune disease which I say sometimes although i don't know whether that goes does any better either! I do hope you can resolve this and don't put yourself at any more risk than you need to. Take good care x
I understand what you’re saying about a seasonal flu (also Coronavirus family) , however we have a Flu Jab to help protect the vulnerable. Here we have no vaccine, cure or valid treatment options although some reportable cite a combination of antivirals and antibiotics being helpful for somebody cases.
That being said, I don’t think the elderly, vulnerable or those with chronically illnesses should panic.
As long as we take precautions as suggested by PHE and may be adjust our habits regarding gathering of people/groups for a while maybe. The GOV haven’t said that here but in the severely impacted places (Italy), this group have been asked to stay indoors. Of course, those with carers & other family members in the household can still contract it from them as human to human has been reported.
I think being well informed and making sensible decision is key and being a nurse you will agree with this I’m sure
I totally agree. Basic precautions will help greatly. I think the point I was trying very badly to get across is that it is not the black death nor Marburg virus. The media as sensationalized massively the outbreak and everybody even those who are at little risk feel endangered. I did a little shopping yesterday and despite media stories to the contrary there was no shortage of toilet rolls nor panic buying of pot noodles. The only empty shelves were all types of handwash. The media have not behaved very responsibly and I feel that we are in danger of self induced hysteria.
I once had a virus about thirty years ago where I couldn't breathe, I coughed and coughed and gasped when i took an in-breath and the doctor thought I had a collapsed lung. Don't know what it is, if I could find out when I had it exactly I could see what it was - but I was young and more philosophical back then. Not sure I would survive something like that again,
I live in Tenerife.....a beautiful place to be
All I can say is we have some of the best hospitals, Doctors and medical teams in the world. The recent outbreak in one of our hotels was handled with care and correct procedures by all the authorities in The Canaries. There is no panic or hysteria by anyone who lives here.
Pity the press and media away from the island didn't do the same.
I wasn't comparing it but as an all year round sunshine island we get between 10 and 12 million visitors a year. That on an island approx 65 miles x 32. That's a pretty high concentration of people in one area.
According to both the UK press and many guests in the hotel the island was in lock down. Apparently no buses or trains were running. Clever as we've never had trains!!
This is the type of scaremongering the media creates and no doubt England will get same treatment.
Tourism is our biggest industry...next to bananas. People are cancelling holidays and airlines flights. Bums on beds in hotels are down which means laying staff off.. The whole knock on effect is potential disaster. All this caused by outside media.
Hurricanes, calima, thick red dust...Oh the mess!!! Mango and avocado trees in my garden have been shredded. I had red hair as did my dogs!! But resilient as always we will survive.
Think thee and me having our own little discussion!
What really makes me angry is how the media can whip up a storm which panics people. That was problem here with the potential to damage people's lives. Not with the virus but with their untruths....not bothering to check fact.
Now go across to Australia where loo roll factories are now working 24 hrs flat out to meet demand of panic buying. Yet to work out what they are going to do with 100s of loo rolls!!
We are already getting the 'treatment' from the scandal sheets of the Mail and Sun, ramping up the hysteria. There is already panic buying, and my son suggested we stock up. I bought a few things. like a big pack of loo rolls, and some extra rice and pasta, and a few tins, but I'm not going berserk! I get Tesco deliveries anyway.
Me? I'm just going to be sensible about the whole thing, and carry on as normal. If I get it, I get it.
Ugh, I never go near those 'papers'. Alas, the BBC is talking about it constantly though. I think it's striking a balance between public information and covering up - we'd soon be complaining if that was the case, so I think the govt are trying to be open as possible but that can then create panicking. So v difficult to get the balance. Yes I get Tesco deliveries too.
Sorry my answer was bit too brief!!
We have been at the front line of the outbreak here on the island of Tenerife and none of the locals who live here are worried. Same in mainland Spain. They have excellent medical facilities as was shown recently when hotel outbreak was contained immediately. Majorca will be equally cared for
The residents staying at the hotel took to social media whingeing and whining. which of course the papers grabbed with both hands.
Yes planes are being cancelled to many parts of the world but even with insurance they won't reimburse passengers.
Go and have a lovely holiday.
I do wonder what being recognised as "vulnerable" will achieve.
If you regard yourself as vulnerable then follow the guidelines extra vigilantly but there are no extras that the vulnerable will benefit from because there is no vaccine, unlike flu.
Ironically I think I'd be less vulnerable at the moment because I'm pretty much housebound and, therefore, already "self-isolating" if it wasn't for the pesky kids bringing their school lurgies home with them.
I must get them (and the ocado man) to walk through a disinfectant trough, like we had during the foot and mouth outbreak, then I'll be fully protected.
The 'most severe' cases will be treated in hospital with access to a limited number of ventilators. If they don't see you as at risk this may have implications for your treatment with limited emergency measures. Maybe if people are hit severely anyway they will be treated as such anyway but if someone isn't identified as vulnerable that may have implications is all I'm saying
Well I wouldn't want to speak for everyone but I don't think that my "vulnerability " should give me any priority concerning limited therapies.
In fact I would like to think that this broken down 53 year old would have less priority over someone younger, with a greater chance of survival but not necessarily classed as "vulnerable".
As I said, I only speak for myself but I would feel very uncomfortable receiving prioritised treatment based on my "vulnerability" and, again speaking for myself, I wouldn't feel comfortable getting treatment at the expense of an otherwise healthy 20 year old.
Why is priority based on vulnerability any better than priority based on age?
Because all the evidence suggests that a fit 20 year old would recover much more than a vulnerable person with a pre-existing condition. But the govt have had to put out priorities because of the shortage of facilities and limited personnel and ergo the need to get help to those who need it most. As far as we know a fit twenty year old will only get a minor version of the bug and will recover without any interventions in most cases.
Don’t think age will come into it as they say young will likely get mild symptoms. However, if they get overwhelmed with 100s or more extremely sick they make have to make decisions based on how severity of the symptoms, the disease progression and how likely intervention will be successful. This is happening all the time though but may be harder with less ventilators and critical care beds.
Perhaps but I still wonder why "vulnerability" should dictate prioritising care.
Once it is contracted we are all as vulnerable as the next person.
Vulnerability is more relevant to avoiding contracting the disease and, on its own, fibro does not make us "vulnerable".
I qualify for the flu jab because my diabetes makes me vulnerable not the fibro.
The fibro just makes me feel lousy and in pain.
It doesn’t as I said it would be severity, disease progression etc advice we are all the same.
Vulnerability only comes into it as we are likely to get severe symptoms compared to a healthier person.
Clinical decisions would be based on clinical presentation and likelihood of certain interventions being futile or worthwhile in individual cases.
Hope this makes sense
But why are we any more likely to get severe symptoms became of fibromyalgia?
Living with my OH and two teenage sons I've had the same common diseases as them and haven't suffered any more severely.
Fibromyalgia isn't very pleasant but doesn't make me vulnerable to other diseases.
Living with two school age sons and a CQC inspector of hospitals puts me far more at risk.
Read my original post - alas FM is often one of a cluster of conditions and not forgetting that some will have been misdiagnosed on their way to getting diagnosed with an AI disease. I have seen it so many times. Many people with FM (and Lupus and other illnesses that present in a similar way) have had pleurisy. I myself had it twice, admittedly years ago but I've been ver careful to avoid it since. I never just get 'a cold' but usually it goes on to my chest and the only thing that finally knocks it on the head is an antibiotic to prevent secondary infection.
But as I said before...it is not the fibromyalgia that makes us vulnerable. It is other stuff.
And, once again, vulnerability does not mean that there is anything extra on offer, unlike the flu virus. You just have to do whatever everyone else is advised to do.
I am amazed that having had pleurisy you are not offered the flu jab, btw, if I were you I would trawl the pharmacists until I found one sympathetic to your history.
Yes that makes perfect sense, Emma. It is only that age often means less ability to cope and ergo more vulnerable which is why the flu jab is offered to the over 65s (I'm only a few years off). This will be based on statistics. Having increasing age and an underlying health condition makes someone more vulnerable which is what i was trying to point out to Carlt
I think everybody is getting into a panic about thus when un the scheme if things flu is by far more deadly, when you think there is over 7 billion humans on this planet and less than 1% will get this virus and die from it sars, the flu swine fever etc are mire deadly. Just follow procedures wash hands and sneeze cough into tissues that you can throw away.
Its all scaremongering really. I have a very low nin existent immune system i have had pneumonia and pleurisy in the past 10 years ago and not overly worried about.
When your number is up its up.
I think it’s being covered up everywhere as well as inaccurate data due to lack of testing kits, people sadly dying before test, people having the virus but mild so not reporting & people asymptomatic plus the incubation period is said to be 14 + even up to 30 days. Reinfection & transmissions to animals is also being looked into.
The advice now is to only ring 111 if you take the following quiz and are directed to ring for further advice - as 111 was getting overwhelmed.
Also, conspiracy theorists have picked up on the FBI arresting Dr Lieber & 2 colleagues who had link to Wuhan University - ie giving information that was secret.
I’m really unsure if this has anything to do with the outbreak but some saying it’s a strange coincidence!
Hope this helps
Thanks, sound advice Mdaisy.
But yes a lot of conspiracy theories abound!
Interesting that on here quite a few people saying it's being hyped up and aren't worrying (yet possible a group that should be worrying more than some) and yet other areas of social media feel our government are covering it up! And yet it's on every news broadcast. I think inevitably people will stockpile and panic and there is always a happy medium to be drawn but I do think it's best to be over-prepared than under
I agree to some extent that it is best to carry on as normal and take advice from PHE. However, I also think adapting behaviour for a while until it burns out also doesn’t hurt and is up to the individual themselves and depends on how many dependents they have etc.
There’s not a lot we can’t do as it is a highly infectious disease but washing hands more often, mindful of others (ie self-isolate if needed) and stay away from large gatherings if in the high risk group (which I am).
This is best in my opinion, for 2 reasons your own health and reducing strain on NHS so they can manage this crisis as best they can. We all know, sadly that our NHS are going to bear the brunt of this so I hope that volunteers are drafted in to help with things like giving out food/drinks etc.
It’s likely to be a bit bumpy for a while however I think we’ll be OK if we look out for each other. I am also glad scientists are working together on this
All the best
Hi Nuttyshirlz - yes my family members have had flu jab. I probably could still get it, I think you can get it until end of March but usually I haven't bothered.
Just to add:
The advice now is to only ring 111 if you take the following quiz and are directed to ring for further advice - as 111 was getting overwhelmed.
We have had our 1st case in Hampshire (Winchester) now transferred to London hospital. I have a number of conditions that mean I am at higher risk and so I am trying to take reasonable steps to try to avoid this and I think that’s all we can do at this stage.
I sincerely hope nobody gets this infection and wish you all well x
All the best
My sentiments are what this sign says:
If I get it I get it, if it’s meant to be it will happen regardless!
I’ve been into anything from late 60’s onwards; I’ve always had fun and always intend to!!! I’ve been following a band of 3 young Mexican sisters since they were 7, 10 and 12 and predicted their future, that was 7 years ago, this is them now; maybe the future of modern rock music I think!!!
And their website
I have always loved music and my earliest memories are from early 60s when I was in Liverpool I remember most of the music from the late 60s and by early 70s was very much into Alice Cooper and David Bowie (the latter who I saw twice, once in his Ziggy Stardust ear ). Then it was punk, new wave, and New Romantic, and goth and then we had all the Manchester music though I was past clubbing by then - I started at the age of 15, or even a week or so before my 15th birthday!
What a time to have been in Liverpool!!! I’m jealous 😂, I went to the cavern club in my late teens to see Status Quo, this was the original Cavern club, Quo went there because they wanted to perform where the Beatles had performed! If I remember correctly it was in February 1970; I’d not long gone 18 so my parents couldn’t stop me 😂
From then on I was into Led Zeppelin and some of the psychedelic rock like King Crimson and Captain Beefheart, Emerson Lake and Palmer etc etc. But my music tastes have always been quite diverse, I also liked Surf music, Northern Soul and Motown and oddities like Manhattan Transfer. Nobody can accuse me of having a narrow minded attitude towards music!
Yeah but I was too young to go to the Cavern then, I was only a tot! Great that you went to the original Cavern Club. I went to the one over the road in the 70s and it wasn't very good! I revisited Liverpool over ten years ago and the original Cavern which is the only time I've been in it!
I was also into quite heavy music early 70s and like you I have wide tastes I saw quite a few bands in Liverpool (not all of them cool ) and many more in Bournemouth where I moved to early 80s and was there for many years. But yes I like all sorts of music. Some things that are quite naff but very nostalgic! I also like some folk, some jazz, some world music, some carols!
If you catch it the people with higher fatality rates and vulnerable category are goes up with age 60 to 69 3.6 % 70 to 79 8 % over 80 nearly 15 % this is fatality, at risk if you catch it is as follows an exsample, chronic respiratory disease, cardiovascular disease, diabetes, hypertension,they are saying it is age related
I wasn't even offered the flu jab Boxermad because I've not reached the magic age of 65 and having FM and ME don't qualify. However, as I have been diagnosed with ME more recently I've had it on good authority and heard via ME expert Dr Charles Shepherd and the like that at least ME is recognised by the WHO as a neurological condition. You might be interested in this link (but only mention of ME and not FM):
Since ME and FM often go together I think we all have a strong case for flu jab and to be treated as vulnerable at this time. I have sadly seen the NICE guidelines applied in different ways for flu jabs according to where you live and my own GP surgery doesn't offer them to people with ME or FM