Is anyone, living with a co-cohabitant who has decided not to take the Lateral Flow Home Test. (A decision I absolutely respect,) but how best to deal with this dilema? Any idea's out there. Regards Ron
Moral dilema.: Is anyone, living with a co... - CLL Support
Moral dilema.
Written by
Vindicatrix
To view profiles and participate in discussions please or .
25 Replies
•
I am not sure what the moral dilemma is..
Lateral Flow Test:
- reliable positive tests
- unreliable negative tests
If your cohabitee did test, and had a negative, it would not be a reliable negative..
I don’t much believe in LFT, more interested in:
- people acting cautiously, mask wearing, avoiding indoor spaces, etc etc
- home mitigations of HEPA air filtering, ventilation
I looked at your profile — always a starting point, to establish the risk profile of the CLLer.. is this someone at higher risks through treatment/recent treatment/neutropenia/age/comorbidities etc?
Which country are they in (how can I tune my response better for their national situation, such as I know it?
It is helpful to put some age indication in profile notes.
It is helpful to put country in your profile.
I establish that you are older (more comorbidities) and in the UK
I am not taking the time right now to read multiple of your posts to establish the precision of my assessment..
You get more and better replies with just a little more profile information about yourself.. even the ever helpful volunteers/admins are suffering their own ups and downs of a CLL journey, so we should make it easy for everyone to help with the minimum of their time/effort. 
Neither my wife nor I have taken a LF test. She is more at risk of catching Covid by doing the shopping. But we are both fully vaccinated, and now all cohabitants of clinically extremely vulnerable people are entitled to that. So making sure your cohabitants are vaccinated is your best protection, along with hygiene, and masking and social distancing outside the home.You could use the LF test to screen visitors you allow through the door. They would have to wait 15 minutes.
Yes.. just that the LF test, if used as suggested, does not provide a reliable negative test.. so the visitors could be asymptomatic infected cases.
Yes, thanks. It's not foolproof I know, but if used in conjunction with other measures it sways the odds in the right direction. Do you have figures for LFT sensitivity?
Accurate tests have obvious value. Inaccurate tests much less so.
It makes zero difference whether the test is 50% or 60% or 70% accurate.. we cannot rely on LF test to correctly show negative COVID status. End of.
The use of other measures makes zero difference to my first statement:
LF test is unreliable predictor of negative COVID status.
I just edited out an error in my last response.
Sensitivity of a test is a measure of how often false negatives occur. I was wondering if you had any figures on LFTs - how unreliable are they? To say it doesn't matter is to say all tests - for anything -are useless, as none is infallible.
I can and will shortly use Google — the unreliability has been widely commented..
But again, let me try to emphasise my straightforward point, with an analogy.
—-
Dinner party - chicken satay
A hypothetical peanut allergy test: 50% 60% 70% 90% - take your pick - reliable at showing non-allergy..
Your putative dinner guest takes the test and it shows “non-allergy”
Well, tell me: Can you safely feed your guest a peanut satay sauce?
— or will they suffer anaphylactic shock and die?
—-
Lateral Flow Test accuracy?
Very variable. What numbers are reported?
48% to 58% — as accurate as the toss of a coin..
A positive result DOES indicate virus positive
A negative result? Cannot be relied upon.
Numbers, thanks.
To take your previous point, of how numbers matter..Well, this is more nuanced;
Lateral Flow Test for COVID
It does not detect all positives.. but positive results are useful, because they almost certainly show infection.. Thus any detections (any positives) is useful to learn.. Outcome: such tested people must isolate.
=> positive results have value: it has helpful to know each one
It is ~50% accurate on negatives..
=> negative results have nil value.. They do not give any certainty of anything; but this figure could be 80% or 90% and it would still be too vague to be of use.. something closer to 95% accuracy would be necessary for negative results to be a good confidence level.
We don't disagree that LF tests have their limitations. My suggestion to the OP was not to rely on them but to use them only in conjunction with other measures. To reduce risk we combine various forms of protection knowing that no one measure is infallible. The only way to eliminate the slightest risk of dying of Covid is to kill yourself before it gets you. I won't labour the point any more.
In my view, though, it is right to sound the alarm about relying on LF tests as a bridge back to normal social interaction as it used to be. Because that seems to be the direction of travel here in the UK. Hancock and others emphasise the accuracy of LF tests, quoting a specificity of 99.9 percent. gov.uk/government/news/new-...
As if the purpose of the test is to avoid isolating people unnecessarily! As you say, the important thing is to avoid infectious individuals mingling with others, and the relatively low sensitivity of the test means that won't happen unless there's no virus in circulation. We are not yet at that point.
We do disagree.You do labour a point, though I find it confused and somehow self-contradictory. You seem to be searching for some direct value in the lateral flow test for CLL families, yet there is none.
Me: The lateral flow test has precisely zero direct value to this CLLer high risk group.. alike my analogy of peanut allergy, where such allergic reaction might see someone die..
The lateral flow test was purchased in error by UK government following pseudo science, false herd immunity concept, “let the virus run through the population”, eugenics, etc — UK’s public health professionals would not have purchased it, as it has little value.
What use is it? Well, for national statistics, it does a little to help identify infected folk.. epidemiological statisticians can extrapolate and estimate..
But it will not prove that your guest / friend / cohabitee is COVID negative, thus it has zero direct value to us CLLers for whom SARS-CoV-2 might be fatal.
It is better that we CLLers identify air filtering purifiers that we can use at home to mitigate risk.. learn to open windows, and so on — these are real mitigations of risk.
Hi Shedman, I read your post about the Lateral Flow Test. There is no doubt that some of what you say is relevant. Regarding the efficacy of CLL patients taking it. I don't know what the CLL Professinals view is on this, I would tend to listen to them. I'm told by my Doctors that there is some value in taking it, and as he says, it's another layer of protection, at whatever level.
CLL aside, you can ony research as much as you can from all perspectives, and then make your decision. At this time there appears to be no evidence of a serious downside to taking this test. So therefore on balance I feel it's best to take it regardless, even if the benifits are minimal, every little helps. A personal view. All the best. Ron
I hear you Bill, but...
I tend to listen to the experts on this.. ..that would be the testing people, immunologists and public health.
The experts:
Lateral Flow Test is a “red light test” : a positive result will almost certainly mean there is infection.
It is “not a green light test” : a negative result is highly unreliable..
The licence for lateral flow test in UK was granted to do with evidencing infection, not with showing lack of infection. Odd, but true.
The experts would not have bought this test, since it is too unreliable.
Our CLL is utterly irrelevant to how the test works, of its unreliability, except for our higher risk from infections, including COVID19, and thus what a much worse idea it is that we base our decisions on unsafe information.
How is the lateral flow test a level of protection to you?
Your cohabitee takes the test.
They get a negative result.
A negative result is only so reliable as the toss of a coin, 50:50
How does this help you? Perhaps you can explain?
Your CLL consultant certainly cannot explain, since it provides zero benefit.. your cohabitee might or might not be infectious..
Now what?
Well, I’ll tell you what, your awkward conversation now proceeds *safely* as follows:
“Sorry, I understand that a negative result is nearly meaningless.. please go and get a proper PCR test.”
Awkward!?
End.
Sorry, but in this case, what I have written is correct.. it is the conclusion — it is not a discussion point, an opinion, it is fact.
Brutal as I may well sound.
I don’t understand your reasoning:
“..there appears to be no evidence of a serious downside to taking this test”
Serious downside?
Again, the downside arises if you rely on a negative result to inform risk based decision making.. because a negative Lateral Flow Test result does not reliably indicate anything.. odds/accuracy are 50:50, alike tossing a coin.
Yes, worth taking, in case it quickly shows a positive test.. at that level, it has some value.. but it mostly shows highly infectious state, a state that is often symptomatic..
So, I’d expect my flatmate to declare if he develops symptoms.. I would do the same.. at this stage, he/I isolate..
Yes, he could take the lateral flow test, it might well show a positive.. but if it shows a negative, that does not mean he is not infected with COVID, so how does it help?
This is a test that is mostly useful for building some larger statistics for national statisticians/epidemiological modelling.. very little to do with people like you or I.
Public Health might use it for ‘surge testing’ - to get lots and lots of quick tests done in an attempt to find location of infections.. they would then get PCR tests done.. and take the track, trace, test, isolate path to isolating contact of the infected and so on.
It’s value is of speed, which speed with inaccuracy has no value for making critical risk decisions.
Sorry.
Take care.
Thanks for your frank reply, and assessment, Shedman, you are obviously very much more knowledgeable than me on this sublect. You mention experts, well we know all about them. You will always find an expert to support any assessment. I am also aware that there is Politics involved in most decisions the Government have so far made in respect of 'Covid', and I think that will continue
However at the END OF THE DAY one has to make a decision of some sort, and as I do not have a degree in science or in a medically related subject, I am going with the decision of our Democratically Elected Government.
If there was the slightest indication that taking this test was harmful (Politics aside,) I am sure that they would not be supporting this mass testing. We could analyse this until the proverbial cows come home, but I'll conclude this little inarticulate rant of mine, with this Shedman, I thank you for your well researched and well meaning comments, and respect them. All the best Ron
I wish you luck with going along with UK govt ... the experts declare, loudly, that they have gotten lateral flow test entirely wrong.. that it was a faulty purchase to begin with, and that current use cases fall near outside of the licence granted to this test.
If you can find a relevant expert group who agree that the Govt lateral flow test purchase and promotion is right, then I’ll eat my shorts. — there is none who do.
Taking the test is *OF COURSE* not harmful.
That is simply not the point!
Messages here are read by the entire CLL community.. we all go through vulnerable times, times of confusion and being unsure..
..it is important that we put responsible information here when we are coherent and clear-headed.
So:
- the lateral flow test does not harm you.
- the lateral flow test is unreliable:
..positives are quite accurately positive
..it misses lots of cases, including asymptomatic / early stage COVID
..negatives are 50:50 no better than tossing a coin;
..don’t make decisions based on negative lateral flow tests.
I am sorry if my post, was not, responsible, clear headed, and coherent. I may agree with you on thelast two comments, but certainly not the first one. I like to think that I do take my posts seriously, shedman, and I'm sorry if I have not. However, think you have said it all, when you accept that positive tests are positive, and that they do no harm. Err on the side of caution is not a bad thing in my book. Anyone that tests positive, is one less person, unknowingly infecting the community. I have found your posts, worthwhile, and informative, shedman, but I think we are approaching the stage where we disagree, agreeably. Regards Ron
You missed my point: you, me, Benbivisplace — we are currently clear-headed.. but we are not here alone.. there are lots of HU members reading this.. yes, if an issue is clearcut, it is most responsible to state it clearly.
I missed your humour.
The Lateral Flow Test is very little direct use to us CLL community with highest risks if we catch COVID19..
..we cannot rely on a negative lateral flow test to inform our risk based decisions, eg. whether it is safe to spend time indoors with someone based on them testing negative.. that negative is a 50:50 guess.. nothing more.. it is not what the lateral flow test is used for - we owe it to this community to be clear about this.
—-
Again: the harm is not doing the test.. obviously.. I never for one moment suggested it was..
The potential harm is assuming that a negative result from this test means anything at all.. but you know that...
So, in fact, we agree..
How you wish to see or view the lateral flow test results is up to you, just don’t promote it here, as though it were directly useful..
..as the more confused and distressed amongst us need straightforward science clarity where possible.
PCR test results remain highly accurate - give good reason to isolate, and reliable results to inform confidence.
Stay safe.
Hi Bennivisplace, I enjoyed your informative post. after reading most of the posts on Lateral Flow Tests, it's apparent that one or two people are adamant that they do not benifit CLL patients in any way. I am not convinced of this yet, and would have to have the actual proveable facts from those that do know, before I came to a conclusion.
However, in any event, and CLL aside, the evidence so far seems to be, that there is some benefit, to non CLL sufferers in taking them. The extent of that benefit so far, is unknown, and that appears to be the sticking point for many.
Another problem I think is, in the past year, we have had so much Scientific, and Medical opinions on 'Covid' that most people are now thoroughly confused. We are literally being blinded by science, by the so called experts in their chosen field. Eventually we have to do our own risk assessments, based on the information we can assimulate, make our decisions, and if we get it wrong, it's entirely down to us.
My own personal risk assessment is, that it is better to take them, than not, as it seems to me, that the benefits exceed the risk. Until the scientific and Medical Experts, uniformally, and categorically, tell us differently (Unlikely I suspect.) I choose to take them. All the very best, Ron
Thanks Ron. Lateral flow testing to screen people for current Covid infection is what we're talking about here isn't it? That test, though far from perfect, should work better on CLL patients because if we get Covid we are less likely to be in the asymptomatic group for whom the test is less sensitive. I don't have a reason to test myself, only visitors perhaps. If I got symptoms I would get a PCR test as soon as.
Antibody tests in CLL patients, post vaccination or post infection: that's another story, much discussed on this forum.
Thanks bennevisplace I agree with you, and I found your post, responsible, clearheaded, and coherent. Sorry , that was my attempt at a little subtle humour, after reading shedmans reply to me. Whilst I appreciate the concerns, of CLL sufferers, and the seriousness of this terrible condition we all have, I trust we are allowed, a little bit of humour, now and again. If not, I am in the wrong place I fear. All the very best
😊
CLL - symptoms of infectionA common problem we have with infection, is that due to our compromised immune systems, we don’t show symptoms as readily as other infected folk..
This is why we are told to contact our haematology triage team / or emergency care at a lower critical temperature.. we have smaller thresholds to watch for that are readily missed — missed by us, and missed by most medics..
It makes it important that our primary care doctors understand that CLL <=> immune compromise ... so they escalate our infection risk issues far more quickly than otherwise healthy patients.
..so, lateral flow test: is it more likely to show our own COVID19 infections?
I suspect the jury is out.. though probably less likely.. we are likely to show COVID symptoms more slowly than folk with healthy immune systems.
Thanks shedman, but with all due respect I don't need any more scientic justification for not taking Lateral Flow Tests. I'm suffering from Information overload, as I suspect, are many other CLL sufferers, who don't have Scientific Degrees.
I think there is a place for the relevant, and important information, you and others of a like mind give. I also think, that those who can understand it, will be grateful. But there are, I suspect, many on this site, who are as baffled as me by the science.
Much as it may frustrate, and concern you, there will be many who will tend to listen to the Government Experts, who like all experts, yours included, sometimes get it wrong. You appear to have a fixation with Government Bias, and I daresay their Scientific Experts, would make a similar claim againts you, perhaps. Bias goes both ways shedman
Challenging the Government at every stage of 'Covid' is entirely the right thing to do, and you are doing a good job in that regard. However, you must respect the contrary views, held by others, as qualified as you. I am sure that like you, they also 'Know they are right'.
I do genuinely believe that the Government, are doing their very best to keep us all safe, and the gradual rollout of the Lateral Flow Tests, are all part of this.
So there it is, we are both back, facing the brick wall, as we are never going to agree on this subject I think. Keep on challenging though, there is room for all views on this site, even if sometimes, we get it wrong.
Finally sheridan, I am all out of gas on this,particular subject, and am putting it to bed. Stay safe, all the best. Ron
Just for the benefit of every one else reading this..
Lateral Flow Test
A very unreliable test.. positives are almost certainly positives..
Negatives are 50:50 (coin toss) unreliable..
..this test misses lots of infected cases..
We CLLers are at high risk from COVID19
Simple logic: thus we must not rely on results from Lateral Flow Test — as a negative result might Be false - might actually be an infectious person.
——
The UK government have other reasons to want people getting regular tests.. even this unreliable test will show some correct positive results, which is helpful.. also they have bought a huge number of these tests, so might as well use them, and this testing looks good, looks like they are taking action.. It’s good PR.
The *independent* experts do NOT recommend we high risk CLLers rely on a negative Lateral Flow Test to be evidence of no infection..
(nor do they recommend it on this basis to anyone else.. )
Here ends the facts.
—
Stay strong. Stay safe. We are all in this together.
I missed that — you actually want me to provide links to the many expert statements of what I said already.When i come across them, I’ll add them here.
I get that need - my science degree has helped me to read widely and identify suitable scientific groups unaffected by government messaging or other affiliation / bias.
Then you will be able to believe the reality, rather than UK Govt misinformation and justification of an unwise, poorly informed, test purchasing decision.
The Government pushing people to get tested makes population-wide sense.. more tests helps to find some positive/infected folk.. helps the efforts to find infection and identify / track / isolate the infected.. just that this Lateral Flow Test is a very poor test.. precisely as described already.
Positive tests are quickly given PCR tests.. to accurately confirm.
If you can find a relevant (public health, virology, immunology, testing..) expert group who are presenting confused consensus views, then I’ll eat my hat.
This from BMJ (British Medical Journal) 11 Jan 2021
— UKs Independent Sage panel (formed to give independent expert medical/public health/pandemic advice during COVID19) encourage Govt to use lateral flow test in schools, to help find infections as a part of a range of measures to make schools safer, with professional supervision and support for families where a child tests positive.
The item goes on to declare the accuracy of the test.. it is VERY LOW.
As we are clinically extremely vulnerable, that VERY LOW accuracy is reason we must not base risk decisions upon a negative lateral flow test result.
Not what you're looking for?
You may also like...
Should I go to a CLL specialist?
I posted a couple months ago about my family history with CLL but I have found out since then that...
High Alkaline Phosphatase
I had bloodwork recently, for a physician other than my CLL Specialist, who told me today that one...
CLL
I am a 53yr young fit active healthy person who has Just recently been diagnosed 1month ago with...
New to CLL
Hi I was diagnosed with CLL in mid May and am coming to terms with the situation and all kinds of...
Ibrutinib ..Sore Infected Fingers (paronychia)
Has anyone with CLL on Ibrutinib suffered with this? My mum seems to be getting one side effect...
What a Great guy Aussie Neil is!
Accessing new treatments against COVID19 and priority PCR home test kits
Blood cancer uk explain why some CLLers are finally getting priority PCR tests 
Update
New to CLL
