Characteristics associated with hospitalisation for COVID-19 in people with rheumatic disease - fully published report on the data collected by the Global Rheumatology Alliance. ard.bmj.com/content/early/2...
Anybody want to chat about this?
Dr Philip Robinson on twitter (@philipcrobinson) gives pithy highlights.
As we knew from the early media releases prednisolone increases rates of hospitalisation when dose is 10mg or greater.
In some instances risk is reduced - Anti-TNFs.
Hydroxychloroquine made no difference to hospitalisation rates.
The co-morbidities - eg chronic renal disease, hypertension, diabetes, and cardiovascular disease - were a big factor in increasing risk of hospitalisation.
Also age over 65 was an increased risk.
And, if I read it correctly, Lupus was a higher risk factor than any other Rheumatology category. Maybe someone can read to check that.
Not particularly happy news, except for those on Anti-TNFs and not on prednisolone who may have some protection????
But maybe could have been worse. I feel happier knowing something about the risks, rather than the big unknown at the beginning of the outbreak.
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Cathyan
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Hey Cathyan - thanks so much for posting this. It's pretty important and heavy news, yes. I have had good(ish!) look at it and, as i didn't want my comments to get lost, I posted separately my further research into the matter as you mentioned the Twitter discussions and found a rheumy's video on his take on the results of this research paper. I got confused by what he said so have posted my ramblings. Hope that is OK. I mentioned your post of course - as this is where the link to the research is obviously. Hope you are Ok - I was pretty sad to read the results re SLE. x
Actually Cathyan - am going to post it in here in reply to you as here as I probably should have originally. Sorry, I'm a bit hot and bothered today ;).
So.... here is a Rheumy talking about it. ronankavanagh.ie/blog/rheum... Look for the section on the the list "Are there any particular rheumatological diseases at higher risk of hospitalisation" for clarification. Also, it's confusing as it states that being on DMARDS such as Methotrexate isn't now felt to lead to increased risk of hospitalisation. However on the research paper Cathyan posted it looks like there is increased risk of this -have a look:
Table 2
Demographic and clinical factors of patients with rheumatic disease diagnosed with COVID-19 by hospitalisation status
First percentage is "not hospitalised", second percentage is "hospitalised"
Most common rheumatic disease diagnoses† <0.01
Rheumatoid arthritis 121 (37%) 104 (38%)
Systemic lupus erythematosus 37 (11%) 48 (17%)
Psoriatic arthritis 52 (16%) 22 (8%)
Axial spondyloarthritis or other spondyloarthritis 32 (10%) 16 (6%)
Vasculitis 15 (5%) 24 (9%)
Other 66 (20%) 63 (23%)
Rheumatic disease medication prior to COVID-19 diagnosis‡ <0.01
So the way I read the info from the research paper that Cathyan posted was 54% of people were hospitalised if on csDMARD - compared to if on btsDMARD. Is that how you read it too? Neither is good obviously but I'm confused by what the rheumatologist has said in his video. It was a blanket "DMARD usage doesn't show increased hospitalisation". Have dared to tweet him to query this! Will update if he responds. Oooo look at me all techy socially... who'd have thought!:).
DJK99 thanks very much for getting stuck in and looking into this further. And thanks for the link. Brain not working this evening so I’ll try to understand it all in the morning!
I’m quoting myself further down here as I have similar queries to yours and this information you quote is making me more anxious (so I’m glad you had the courage to query this on his tweet!):
“The Immunesuppressant medications we take are mostly the same across the rheumatic autoimmune disease community so this part is what is interesting to me - (not the part listing which rheumatic diseases seem to put at highest risk of themselves. That just really addled and riled me!)
For instance, as far as I’m aware, almost everyone who has Scleroderma is shielding because this disease causes more fatalities than any other rheumatic disease - and most often affects the heart lungs and kidneys. So most if not all with Scleroderma will be shielding so are going to be less likely to have been exposed to Coronavirus than those who haven’t been classed as needing to shield. Which of course influences the data significantly“
Sorry hope I’m making sense! Basically I didn’t like his list, differentiating between the diseases in terms of risk, at all. It seems potentially very misleading given that we with rheumatic autoimmune diseases are more likely to be shielding so less likely to end up in hospital than others.
Also why list the different diseases at all - too many have overlaps so this isn’t helpful or relevant I feel? Since it’s such a incomplete list better that he didn’t bother.
The part about risk of medications is surely the part we need to focus on?
I'm gonna stick my neck out here, but I don't mind if you are all angry with me.
So..... I know covid-19 is a killer. I know I am vulnerable/ maybe high risk, according to some on here. I just don't get why constantly going over it, helps. I'm referring to these 'facts,' that keep popping up. Will you die/live? Immunology meds/ steroids/HXQ, bigger risk of death. Today it's apparently not more risk. It's stupid for me to expect there is no talk of it. Of course we must share our fears. It's the data that keeps appearing. I'm sure I'm not alone in thinking this. We are at risk, we are worried, and we need to support each other on here. But less of these statistics please. IMO not helpful, just scaremongering.
I know what you mean, truly I do - but I need to know the facts... I need to stay abreast of it all because knowledge is all to me. I have to understand a thing or else I get anxious - but I totally understand what you are saying. I guess I love everyone's photos of animals and their gardens for the very reason we all need a break from stats and facts - and we can make our own minds up on which posts to read.. and I hope you are doing OK Lisa - I know I'm struggling... but it is what it is.. Virtual hug - if that's ok. I'll post some pics of my terrace and swifts - no stats there! x
Look at it from my point of view. After 6 yrs, I decided to rejoin This community. I knew I was vulnerable to covid-19. In the 2 short weeks I've been back, I'm gonna die if on HXQ, or pred, or immunosuppressants. If I was a weak person, I would be petrified if I got covid, sure in the knoweledge that I don't stand a chance. I am not a weak person, and very strong willed, so I can just scroll down to the next post. I don't understand how this helps your anxiety, but hey, each to their own. I respect your reply, and wish you well. Was just shouting out for the worried members on here. I don't need to see dogs/cats to cheer me up either. I adore all animals and especially love birds. I'm sure lots will take a keen interest in your post, and that's your right to express yourself. I just find it a bit strange and not supportive.
Thank you for posting this. I, too, prefer to know. It’s just how I work. I must know the best case scenario and the worst. I will definitely read.
We are all different. Some will read. Some won’t want to. We must respect this. No one is right. No one is wrong. If you don’t want to know, don’t read.
We should feel able to post without fear of being criticised.
To be honest I was hoping these stats would be kept, as I am hoping the one good thing to come out of this awful pandemic is that there will be a better understanding of the human immune system and therefore our own chronic illness.
So many issues seem to be relevant to us. Vitamin D levels. Cytokine storm. Co-morbidities.
Hi Lisa. I’m so so sorry if this came over as scaremongering. Please don’t leave the forum again because of my post. Hopefully we can all find what we need for support on here.
Like some others on this thread I cope by obsessively searching for information and I joined this forum a little while ago because I felt very alone in facing this Coronavirus situation. I’ve been a member of Lupus UK since 2001 and I’ve always found it a good source of up to date information. I completely see that others might need different things from this forum. No offence taken, and I’m very sorry for any offence given.
I'm not trying to make you or anyone else, feel uncomfortable. Others post the same, so not personal. Just didn't get why it's helpful. As I said before, I will keep on scrolling past the post. Do what helps you all. Clearly I'm out of touch with the meaning of support, nowadays.
I didn’t mean to come across rude and I certainly don’t want to upset anyone.
I just felt it was a reasonable post with a legitimate BMJ link.
Unfortunately not all post can be upbeat. I know I have posted here many times since I joined in 2013 desperate and looking for support and advice. That’s what we’re all here for. To help each other with our rough patches.
Everyone should be able to post what they want to discuss.
I never said you were rude, or that you can't have an opinion. Seems I'm not allowed one tho. Carry on doing what your doing. I'm just gonna scroll past.
From my perspective - with having multiple autoimmune syndrome (MAS) the data gathered so far from this study seems relatively small and lacking.
I feel there are far too many variables not yet understood for this to make a meaningful contribution to my own knowledge and understanding - or related decision making.
For instance there is no mention at all of the many different types of Vasculitis. Also Systemic Sclerosis and Myositis aren’t mentioned at all and nor is SS. I find it hard to trust research that doesn’t mention these. I bet if someone was in hospital with SS and severe Covid 19 no one would even make the connection? Yet for many it’s affects on the airways are much like severe asthma. But in reality it would probablyJust be classed as Lupus or RA so is yet again left off this data altogether.
Personally I would like to read material that doesn’t distinguish between risk factors for each rheumatic disease. For one thing RA , PsA and Lupus are more common than others - for another it must surely depend on which part of a person’s body the disease impacts on most and to what extend their disease group have Been shielding.
The Immunesuppressant medications we take are mostly the same across the rheumatic autoimmune disease community so this is what is interesting to me - not the part listing which rheumatic diseases seem to put at highest risk.
For instance, as far as I’m aware, almost everyone who has Scleroderma is shielding because this disease causes more fatalities than any other rheumatic disease - and most often affects the heart lungs and kidneys. So most if not all with Scleroderma will be shielding so are going to be less likely to have been exposed to Coronavirus than those who haven’t been classed as needing to shield. Which of course influences the data significantly. I
I do just wish they would just say that all id us with rheumatic autoimmune diseases should effectively shield, all get a letter to help with working from home, furlough and priority deliveries. Then it’s up to the individual to determine if they really do need to shield based on what their own doctors tell them and also based on which body system is most affected and how well controlled their RAD, what meds they take and do they also have ILD, renal involvement, CNS or PNS involvement or PBC or Diabetes or hypertension or are they obese or male and what age group,
The only VERY interesting thing for me about this new data is that anti-TNFs seem to lower the risk of severe or fatal Covid19.
It just annoys me seeing the mention of RA and Lupus as higher risk than others and no mention of Scleroderma or Sjögren’s and lumping together all types of Vasculitis. Obviously if a person has GPA, for example, then it stands to reason that they will be very vulnerable to severe or potentially fatal Covid 19. And as Sjogrens can be closely associated with respiratory issues and ILD it stands to reason to include it as well.
And where is MCTD or UCTD here - just classed as “others”? When it comes to coding and research this stuff
Other distinctions are surely meaningless because so much will depend on the related comorbidities, ethnic and economic backgrounds, age and gender etc. It almost feels like a hierarchy of seriousness when our diseases are separated out in this way.
Basically each of us have our own unique presentation of CTDs and often many overlaps. So I think we should just assume that all of us are viewed as serious underlying conditions and the rest is up to us, our doctors and common sense. Common ground needed here - Let’s have one umbrella for the whole spectrum of RADs and emphasise the commonalities, not the differences in determining our own personal Covid19 risk.
I completely agree with you. If we were all given a shielding-type letter, we would then be able to use our own judgement and knowledge of our conditions to decide what was best for ourselves. Without one, it is not our choice whether or not we go back to work, which is very troubling. The way our conditions affect us in unique in every case and no simple rating will be able to address the needs of the individual. We know ourselves better than anyone and, being more at risk, we should be able to assess the risks as best we can, make our own choices and be more in control of our own lives.
Stalwart7 - I think that is a good point about the lack of information about certain autoimmune diseases. I am guessing, but it may be because they are so much less common. There would be very few scleroderma patients admitted to the hospital with COVID. I believe that diagnosis was listed in the “very high risk” category. At any rate, doctors would surely know of the patients medications, lung involvement and other medical issues so that they would have been high priority in terms of admission. There may have been a place for individual reports for the rarer autoimmune diseases.
This is precisely why I responded to this post - because the question was asked about whether Lupus was the rheumatic disease that put us at highest risk from Covid 19’s worst scenario.
And I’m fairly sure the answer is no and this maybe why every person diagnosed in UK with Scleroderma is on the shielding list - as far as I’m aware - whereas some with Lupus, RA etc haven’t been.
However I’m not a believer in measuring risk by name of disease at all. I think all with rheumatic autoimmune diseases should come under one umbrella for this purpose of data collection on how Covid19 impacts us - so that, when decisions are made in future about extent of vulnerability and risk posed to ourselves and to health and care services - we all receive letters confirming our higher risk to use with employers, insurance (US), priority food, furlough or home working etc.
Imagine if this research is used to guide policy on vulnerable groups for another even more devastating spike? People with rare rheumatic diseases not mentioned might struggle to get employers or the DWP or other to allow us work from home Or get furlough?
I really do think this kind of research can and will have political And economic consequences as well as affecting our physical health and treatments. As we acquire a much greater understanding of Coronavirus and Covid19 - we also need to remember how many other Predisposing factors interact and that many of us have unusual presentations of rare conditions that may not even yet be diagnosed.
Some with very rare conditions and some of us with rheumatic diseases have other non rheumatic AI overlaps too often slip through the net in all senses.
Let’s just hope these Rheumatologists and epidemiologists dispense with attaching disease labels to a hierarchy of disease risk severity for Covid19 research data - and instead focus on data collection around the broader umbrella of all rheumatic autoimmune diseases and related treatments. This way we with all RADs will be better shielded if and when there’s another pandemic or if this one spikes again.
I agree. It is hard to know how the data will be used.
In the US I think only patients who are treated in clinics are included. When I asked my doctor how patients were doing, he said the lupus clinic is tracking that. He, as a private physician, was apparently not asked to participate even though he is a faculty member. So lots of patients, including me, weren’t included in the report.
See that’s just plain wrong from my perspective! I mean how can we ever expect science to advance as quickly as it needs to if people like you are not being included in relevant data? And if they don’t study the impact of Covid19 on our many and varying AI diseases then they won’t get a true reflection on the huge complexities of the immune system or find treatments that can be tailored appropriately. It’s a one size fits all approach to a very scary new disease that we know presents differently in people in so many ways - just as our AIDs do. They need to learn from all of us in order to learn more about Covid19 and it’s many manifestations?
I think it is the nature of this report. It makes sense that only academic institutions would be included. They couldn’t reach all the private physicians.
There are other studies that have looked at infection in lupus patients and infection in RA patients, maybe in a more controlled manner. This sounds more like observations during a pandemic. It is important but only applies to this virus.
We would have to know how they found participants.
Researchers analyze this stuff extensively, so they won’t draw conclusions that are not warranted.
They do learn from all of us, just not in a controlled study.
What irritates me is when they focus on Lupus and RA as if they were the only rheumatic diseases or as if they were the most serious or as view them as umbrellas for all.
I maybe dimwitted here but I still don’t see why scientists need to take a few colours off the rainbow spectrum and leave other equally or more devastating “others” behind?
Just call it an RAD spectrum and go from there why not? That’s what I feel anyway and I don’t really care who this report is intended for - it leaves me and many others including you, out of the the bigger research picture / and it shouldn’t.
If the medical community is to learn anything from this pandemic I hope it’s that trying to pigeonhole diseases of the immune system will only ever get them so far.
I didn’t read it close enough, but I saw psoriatic arthritis and vasculitis listed, I think. My impression was that anyone with rheumatic illness who was hospitalized was included. There were only 600 patients, so maybe no one with the rarer rheumatic diseases was hospitalized.
I don’t think they were focusing on any group in particular but recording the features of who was in the hospital. The study is ongoing, which means a wide group of patients could be captured.
You may be correct that some autoimmune diseases get less research dollars, though that would not apply here.
I don’t think the report leaves me out at all. In fact, it confirms what my rheumatologist told me when COVID first appeared - that with UCTD and not on immunosuppressants, I would be low risk. The one thing the study shows is that immunosuppressants may be less risk than thought; however, steroids may be even higher risk. The original advice was prednisone at 20 mg or over would be very high risk. This study has it at 10. That could make our doctors even crazier about the steroids than ever.
I don’t know what your diagnosis is but suspect if there was a patient hospitalized with it, it would have been recorded.
Well I won’t bore with my diagnostic mix but basically multiple autoimmune syndrome covers it. I think the emphasis should have been on the meds and not the specific rheumatic diseases - particularly as they are mostly treated with same drugs anyway.
I was really interested in the part about anti TNFs but this almost got lost on me in all the other stuff - which I found to be a bit irrelevant to be honest. I didn’t read more as brain fog wouldn’t allow but I do think the focus should be on commonality not on distinctions/ disease labels in this context,
I have Scleroderma, RA, Sjogrens and Lupus in my diagnostic mix plus other non rheumatic AIDs and comorbidities so I’m in the shielding group. I do appreciate knowing and learning more from these posts and related discussions but I think they only usually provoke more questions with Covid19 than they answer.
Anyway it’s just a spectrum of RADs we are talking about and I don’t really believe in listing the various diseases or the consequences if this kind of paper is then used by governments for determining risk. So much information about the way this disease operates has been wrong to date - I find it hard to trust papers like this one.
I can understand why you would be wary of this whole study. You, like so many people, have features of several autoimmune diseases. Hard to know in this type of study where they would put you, but there was a section for over-lap, I believe.
Every patient is so individual. When making a recommendation for someone like you, your mix of features would have to be considered. That is for sure. It isn’t just the name but the specific symptom such has lung disease from scleroderma or kidney disease in lupus.
Don’t take a study like this too seriously. Only your doctors know your particular risks. It is just being used to see generally how patients with rheumatic illnesses have done with COVID.
Kayhimm I agree and please don’t fret that I’m taking a study like this too seriously. When the big wide world is exploding with justifiable anger about racism and so many have given up on social distancing in order to attend protests or go to beaches in their droves, I can’t get as het up about this as I may sound.
The only reason that I even commented in the first place was because of the question was asked in this post about whether just having Lupus of itself puts us at a higher risk from Covid19 than other rheumatic diseases.
I just can’t see how it would when everyone has their own version of Lupus. And I say this as someone who has Lupus in my diagnosed overlap . Diffuse Scleroderma can effect the kidneys too, as can Sjogrens and vasculitis. All I ask is that researchers focus on the risks from our treatments and from having any RAD - not differentiate. I do feel more confident about my own treatment protocol now at least so that’s a good outcome of reading this for me at least.
I see. Well, I think it has been pretty well established that have lupus puts you at risk of infection. But the study wanted to see how people with rheumatic illnesses were doing with this virus.
I am not fretting. All your concerns are valid ones.
Lots going on in the world, for sure!
Glad you are reassured about your treatment plan. Stay well.
This study is good news not bad. The only thing confirmed, which we knew already with flu, sars and community pneumonia is that high dose steroids are a risk for severe infections.
Pretty much the comorbities that effect the chances of acquiring severe covid, ie cardiovascular disease, high blood preasurr , Diabetes etc were the difference in rheumatic patients aswell. The higher rate than the gp is because of study design.
From the discussion section of the paper
"Rate of hospitalisation was higher than in cohorts of general patients with COVID-19 but this likely reflects the mechanism by which we collected the case information and should not be interpreted as the true rate of hospitalisation among patients with rheumatic disease infected with SARS-CoV-2."
It further states,
"This series of cases demonstrates that the majority of patients with rheumatic diseases captured in our registry recover from COVID-19. In some cases, exposure to specific medication classes is associated with lower odds of hospitalisation; however, these findings should be interpreted with caution because of a high risk of bias. Results support the guidance issued by the American College of Rheumatology and the European League Against Rheumatism, which suggest continuing rheumatic medications in the absence of COVID-19 infection or SARS-CoV-2 exposure.36 37
The study concludes positively for us, stating,
" In this series of people with rheumatic disease and COVID-19, use of DMARDs did not increase the odds of hospitalisation. As in the general population, people with rheumatic diseases who are older and/or have comorbidities have a higher odds of COVID-19-related hospitalisation. Anti-TNF treatment was associated with reduced odds of hospitalisation while prednisone use ≥10 mg/day was associated with a higher odds of hospitalisation. There was no difference in antimalarials, such as hydroxychloroquine, or NSAID use between those who were or were not "
The majority of patients with rheumatic disease will recover from covid19 is the bottom line of this study and that is good news.
I am taking that part of this report as good news in that those with better controlled disease are more likely to recover - which is very promising and exactly what I decided for myself shortly before lockdown.
The part that is much less clear and potentially misleading is when he lists the rheumatic diseases that appear to put people at highest risk.
I don’t see how this list could possibly be even a remotely reliable indicator when most of us with these rheumatic diseases (very much the ones not specified eg Scleroderma, APS etc) are avoiding going out and are more likely to have stuck to the shielding guidelines in the first place?
What concerns me is that it could Be used to back up employers insisting vulnerable people return to work too soon at a time when Covid19 is still here in UK and around the globe - and Is still killing people daily.
They probably haven’t seen nearly as many with diagnosed rheumatic diseases in intensive care units around the world so far because we are the ones who are being most sensible and aren’t risking contracting CV by going out and getting it?!
I wasn't going to comment but have decided that I should incase anyone in a similar position reads this.
"...we are the ones who are being most sensible and aren’t risking contracting CV by going out and getting it?!"
I fully appreciate that this comment was made in frustration about the lacking data, but I do want to make you aware that I found it very upsetting personally and also quite troubling. It reads as if to imply that you have to leave your house to contract this virus, which is inaccurate. Not everybody who has the disease will have left their home or broken lockdown in some way. It can pass in any number of ways through deliveries or essential carers. The comment also seems to imply that those who contract it are not being 'sensible' which personally upset me.
I have been in and out of hospital a lot over the past 9 months. I have had repeated severe infections and sepsis whilst on high dose immunosuppressants, so my doctors had advised we put extra hygiene in place and for me not to see anyone with a cold etc. We did this very rigorously and it had nothing to do with Covid-19 at the time.
In early March I left the house once (long before any lockdown was in place), and this was to see my sister with baby niece at their home. I drove. They were both well and it was an amazing chance to see family after weeks of not being able to, because little one had been unwell after her vaccines.
Two days later my sister came down unwell, and three days after that I was hospitalised being unable to breathe. I had all the classic covid symptoms. The doctors were 90% sure it was Covid-19 but nobody was being tested at this early stage unless they were admitted to a specific ward. We will never know and fortunately after 6 weeks I made a full recovery at home.
To now read your comment has really upset me. I was going to just stay quiet but I then considered that it may have upset others too, who have had the condition or have lost a loved one to it. I decided to comment to simply make you aware of how this virus can spread through no fault of anyone.
I hope you are keeping well and managing in this difficult time x
I'm so sorry - i should have thought harder before making this insensitive comment. As you say it was made out of exasperation in the context of this reported data rather than out of thinking it's anyone's fault if they get Covid19 or that we can't get it even when shielding.
To explain - I was coming at this from a different perspective, relating only to the collection of data re rheumatic diseases and Covid risk rather than from a more general place. I lost both my parents suddenly years ago and couldn't be with them or arrange funerals so I'm actually very sensitive about losses people have endured during this pandemic as it reminds me of what I went through twice. My husband is a furloughed key worker and has lost colleagues and clients so I know that the risks of infection are high for anyone - particularly in enclosed spaces.
But I was just tyring to make the point that many who are shielding with our diseases will try to be extra vigilant precisely because we are aware of how infectious this disease is so this may perhaps be why there are less patients with rheumatic diseases going into ICU with Covid19. This is surely the point of "shielding" although it won't eliminate risk - just hopefully reduce it.
I really wasn't suggesting that we can't get it despite shielding and despite taking all appropriate measures to try to avoid it. I know personally that we can.
As you said I just felt that this may skew the data here as quoted on this post? I don't like data unless it's very collected in a very comprehensive way and I'm just not sure this has been or is that reliable as an overview.
Again I must apologise if I've caused you upset and I completely understand where you are coming from. I’m so glad you have recovered - physically at least. Take care and please forgive me for Inadvertently causing you such upset. X
Yes, very true. And a few other points. Early on many of us got the illness early on before there even guidelines. It sounds like you and I were in that category in early March. Unless people are prohibiting all members of a household from going into the community, they are not shielded and can get the infection. That could be the majority of lupus patients, though I haven’t seen the number of those in the UK who are shielding versus socially distancing. Many vulnerable patients in the US would have a an imperfect situation from an infection control point of view.
So yes, throughout the world there have been lupus patients who have contracted COVID. That was expected. Overall, they seemed to have done well and pretty much as predicted based on how they respond to other infections.
As I believe the uk is the only nation shielding by group, I can not really comment how this international cohorts' study will effect the uk policy.
Full disclosure, I disagree with alot of what I know about the shielding policies. I believe telling those whom the government deemed most vunerable to not go outside at all, not even to exercise, has most likely done more harm than help. Outside six feet apart was never a risk and yet only yesterday were the shielded were encourage to go outside.
Not including obesity as the highest risk in severe covid on the list upsets me greatly too. The scientist still really do not know how any one will do if infected so every single person should be equally safe and protected by the government not just groups well lobbied for.
And as it turns out the shielding policy really did not make a difference. Uk has similar infection rates and hospitalizations as other non shielding countries yet much higher death rates than non shielding countries.
I believe your shielding policies were initiated when your government was against full lock down and thinking that having younger people naturally infected would offer herd immunity.
I think with lock downs, staged openings, sufficient testing, contact tracing and masks with social distancing and personal risk choices, ie if I feel it is too risky to go to work I can apply for medical leave or disability, the need to segregate groups of people becomes less important, hopefully.
All I know is that having a government shielding letter has helped me and others to get furloughed or to be allowed to work from home and get priority home deliveries so we can avoid pharmacies and shops. That’s what my rheumatologist says is the main purpose of being in the shielding group. Society is not about isolating and forgetting m about us - nor tell us not to go out for exercise and fresh air. So if shielding letters give us more control over our decisions And everyday lives then I think they are good so we have more choice.
It’s been a helpful thing for many of us in UK as long as everyone understands it’s only intended for these purposes and is not enforceable by law - nor should it be. Everyone has to apply the rules and guidance around shielding to their own unique circumstances as well as for the greater good.
No one rule every fits all under these terrible circumstances but hopefully more communitarian principles will emerge and prevail in the long run.
There are groups on the list, like asthmatics, who as it turns out are not faring any differently than the general public and then there are people not shielded who have far likely greater risks of being severely ill and dying from covid. So those most likely to die are not at all receiving furloughs economically and are catching covid because they need to go to their jobs or starve. Why do you think minorities are dying at such great rates compared to cancer patients, Asthmatics and rheumatic patients? Because those groups did not have organizations with enough money and clout to lobby hard enough to get put on a government list :(.
Your shielding scheme is very unfair and not scientifically logical and again may not have helped improve the pandemic outcomes in the slightest but I guess I am happy it helped some hide inside for three months with no sun or physical contact. But what about the next 2 years? This is not a short term issue how do you hide from life for the next at least year or more likely the next two years?
I am not saying I do not see covid as a risk but I think staying in your house without any outside contact is a greater risk indefinitely. Being careful to not catch it can be achieved while coexisting within society with the new knowledge, tracing and testing we all now have. New Zealand is proving this as is Germany. Hopefully our countries will follow suit.
I agree with most, if not all of what you say so you Really don’t need to hold forth at me from another country far away.
I just said the shielding letter has helped me personally - but I also know that there were loads of people sent back to work in the construction. Industry for eg - who have died from Covid after having no choice but to use public transport to get to work. Same for other very low paid people care workers, nurses, cleaners etc. It’s been just shockingly badly managed from beginning to now - and all despite dire warnings from Italy about how we should have been responding from their own lived experience.
I also know that it’s a matter of how a person chooses to interpret their shielding letter. I’m very fortunate in that I’ve been out walking in remote rural lanes and fields with no cars or people. Many can’t of course and I think the shielding business has been a fiasco from beginning to end too.
But it’s not been all bad and morally bankrupt either as you assume.
The pandemic has actually had a pretty devastating economic impact on us too because my husband is a low paid key worker who would have been on the frontline if I hadn’t had that letter. You can’t assume you know what ethnic or socioeconomic group anyone here comes from unless you know them personally.
And furlough has helped keep me safe so far - but we are hardly prospering and it will end soon. So I’m just saying that the US and UK are pretty much quits on the disastrous impact of poor decisions from bad leadership regarding risk factors of Covid19. You have many states and we have our four devolved nations all following different guidelines now. So not very different after all apart from that we at least have free healthcare at the point of delivery which we pay for out of our taxes and I am a great believer in the welfare state.
Now you’ve got me straying into politics and I’m loathe to do that here with a stranger from a different country so I’ll bid you goodbye.
Sorry. Stay well and safe. Hopefully there will be an out of this sooner than later I am losing faith in it all and ontop of that the minority group being killed by covid in my country in larger numbers than whites is also being murdered at higher numbers by cops too so I am touchy about equality right now and ashamed at my country's version of white privilege and might be placing this bias against the shielding policy and that is wrong of me.
I just want to say that I appreciate very much when people post stats and medical articles, etc. So thank you very much for posting this and thanks to all who are having a good look at it and replying. I am like you and need information to ground myself.
Thanks from me too Panda. I don't want to seem unsupportive or odd by posting stats etc, so I hope it is generally felt to be helpful, albeit dificult to read - literally and due it being worrying at times. I think we all realise we are here to support each other, but I know I get things wrong sometimes and we can't all agree with each other. These are such very difficult times and I know we are all at the end of our tether to varying degrees, along with being frightened (deep down or not so), confused, lonely, and desperate to be well - and for it to end.. or see a real light at the end of our tunnels. I certainly am... We have to be even more mindful of what we are posting I guess, as much as we can..but we are individuals at the end of the day and as long as we're not saying anything directly personal to another that isn't very kind (we aren't trolls on here after all), we aren't always going to be of one mind completely. I'm so sorry for this when it happens as none of us need any more upset. Love to all x ps. bring on the ducks etc!
“And, if I read it correctly, Lupus was a higher risk factor than any other Rheumatology category. Maybe someone can read to check that.”
I think the categories listed in this report were very misleading. I wouldn’t want governments or SAGE to be relying on this document or related research to guide them for their decision making for Covid19 risk. It’s far too speculative a report at this stage I feel. For example I quote below and surmise that people with systemic sclerosis would be at a higher risk from Covid overall than those with RA or Lupus. But of course there are many less with SSc because it’s rare, as is APS and certain types of Vasculitis.
“Systemic Sclerosis carries a survival rate of only 55% at 10 years postdiagnosis—the highest risk of fatality among connective tissue diseases. Therefore, when any form of scleroderma is suspected, it is imperative that the patient be examined for multisystem involvement.”
Stalwart I had a look at the report with regards to systemic sclerosis and they really don’t attempt to analyse those figures, do they.
We get the numbers for it in table 1 - 16 out of the 600, and then that’s it. Maybe they felt they just hadn’t collected sufficient numbers and that it was inappropriate to draw conclusions from so few. Hopefully no government/SAGE bods will try make blanket policy decisions affecting you based on this.
Generally just by math, the rarer the autoimmune condition the less percent will be sick in the cohort. Also the rarer the condition the more likely to be lumped in the "other" stat.
That’s precisely why I’m suggesting that the umbrella term of Rheumatic ADs should be used for future research purposes. Being classed as other isn’t helpful if a person develops CV.
I really do hope they won’t Cathyan. The economic consequences for some of us of being classed at very high risk has been pretty devastating already. I’d be happier for one umbrella, RADs, to be used in this kind of research. We all know that there are often so many overlaps with autoimmune diseases that I really don’t like the idea of this data being applied where future strategy and policy making is concerned. S7🌻x
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Still waiting for referral. 
Photosensitive Reaction.
