Coronavirus: Advice from ME organisations

My mate and I have just paid the balance on our (UK) birdwatching trip in May. We're assuming the same as always: unless one of us is unwell, we're going.

We're staying in a rural property set in an acre of garden, so if we developed symptoms during our stay, it wouldn't be hard to stay away from other people. Neither of us can afford to eat in restaurants, so we always take a big stash of fresh and frozen food anyway. It could be a bit inconvenient for the owners, as they might have to do more thorough cleaning than usual, but that will go for all of their guests.

It's not really feasible for most people with ME to self-isolate totally for a fortnight – but if you're aware that you're ill with something infectious, you can take extra precautions in your contacts with others. Maybe you could also arm your carers with a bottle of 70% alcohol spray and ask them to glove up and go over the surfaces when you arrive, to help reduce the likelihood of virus lingering on them? Some things often get overlooked during cleaning, especially door knobs, light switches, and TV remotes.

 

25% ME Group on the Coronavirus

https://25megroup.org/download/1796/?v=3226

re Coronavirus and members of the 25% ME Group, Severe ME charity

Message from Dr Nigel Speight, Medical Advisor to 25% ME Group

https://25megroup.org/patrons-trustees-advisers

I have been asked to give some medical advice on the subject. I should stress that I have no real expertise on epidemics like this.

However, one can say the following on common sense grounds:

It would seem very possible that the disease will spread throughout the UK and cause a real epidemic

Therefore anyone and everyone will be at risk of catching it before the epidemic burns itself out

There is no vaccine currently available

It is possible that some antiviral drugs might help a bit

Clinically it sounds like a nasty flu-like illness with a special liking for causing viral pneumonia

One can catch it from people who seem pretty well, in the early stage of their illness

Currently the mortality rate is thought to be c 2%, and "people with chronic conditions" are at especial risk

Although ME is a "chronic condition" my gut feeling is that they are not actually at greater risk of dying from the virus itself than healthy people. The conditions which put people at extra risk would be things like severe asthma or COPD, or immunosuppressed people eg those on chemotherapy for cancer…

 

Unfortunately the ineptitude is so far at every level of government here in the US....federal, state & counties.

Here in Washington State we have had 6 Covid-19 deaths (the only deaths in the US thus far) in a matter of a few days and local scientists are of the opinion that in the 2 counties where the deaths occurred there could be anywhere from 350-1000 infected people out in the community. Yet, there have been no mentions of any lock downs, cancelling of large events, closing of schools (other than for a few days to 'disinfect' them) by public health officials. Our state governor just keeps telling people to 'wash their hands' and 'stay home if you have any cold/flu symptoms'.

I don't understand why they aren't doing more! It's as if they want the number of infected to keep climbing. It's utterly disappointing and frightening.

 

Ok, it’s very limited, but still good to get some information and thoughts on this. Not worrying much on Corona in advance, catching it and dealing with it. Optimistically I guess it works out just fine. At the same time when reading this, I get curious about other patients, when it comes to gut feeling about functioning of lungs. Anecdotally to me, lungs have for a long time been quite a steady limiting factor. It could be other factors than pure ME playing a part here, but just about the only thing I’m a little worried of after all these years, are how limited lungs do function and cope with another factor X.

What I personally know from all these years of ME, is that lungs are not well of. Like rest of the body not having enough O2, meaning the “feeling” of lungs not functioning properly, like air-hunger, shortness of breath, things like that. I mean, if you at times have trouble speaking cause you don’t have any O2 left, well that’s quite telling.

It is often not very clear, very general and limited information when it comes to “risk groups”. I know we’re not near a vaccine in this case, but it reminds me of the swine flu situation 10 years ago. Then it was like rolling a dice, getting or not getting a vaccine. I understand that it’s not easy to differentiate groups, but I would prefer advice on a minimum of medical grounds, which not really was the case in 2009. The swine flu shot was pushed quite hard, almost defining any chronic situation as part of a “risk group”. Don’t know if that actually is the case, at
least when done in a hurry. We know the many sad cases of narcolepsy in this case. Well, I ended up taking the shot, almost solely based on my own, not any real medical advice. Don’t know what that shot did, but actually not sure I would do it again today.

Ok, so ME-patients are presumably not having issues with lungs. I don’t know if it is that easy. But let’s hope in these Corona-virus times, that gut feeling of “bad”lungs are just a feeling and nothing more.

 

The only place where the pandemic is slowing down as far as I know is China, where the streets are empty. In London yesterday they were as crowded as ever. There was no sign that anyone was taking any care to avoid contact. Estate agents still want to shake hands.

 

Ironically, China now has imported some new cases from Italy. It's like whac-a-mole.

 

According to our PM:


Mr Johnson told reporters he continues to shake hands with people.

He said: "I am shaking hands, I was at a hospital the other night where I think there were coronavirus patients and I was shaking hands with everybody, you will be pleased to know, and I continue to shake hands.

"People must make up their own minds but I think the scientific evidence is... our judgment is that washing your hands is the crucial thing."

https://www.independent.co.uk/news/...pdate-map-cases-china-uk-deaths-a9371196.html

I have no words really.

 

I recommend this for a realistic assessment:

https://www.theguardian.com/commentisfree/2020/mar/03/icu-doctor-nhs-coronavirus-pandemic-hospitals

 

Hi Kitty, yeah i'm not going. I can postpone to next year at no extra charge so i'm doing that. I cant be doing with the hassle & extra precautions. I'm mainly housebound so I would be having 4 different people come in & stay with me in my cabin (it's a cabin in the forest on a site with 82 other cabins of between 2-10 person occupancy) & i'd be having most of my meals brought in...
nah... I want to relax while i'm there not be continually having to remind my less hypervigilant carers to wash their hands.

I watched my carer who is, relatively speaking, quite vigilant, bring me in, bring the wheelchair & some shopping in, go to the toilet & wash her hands, but she forgot that before she washed her hands she touched the light switch, the toilet door handle, the flush, the tap..... then washed her hands & then turned off the tap, opened the toilet door, turned off the light. Thus re-contaminating her hands & leaving contamination on all those things for me to touch & then touch my nose, because had i not been watching, i'd just trust that she washed her hands when she came in & been oblivious. She then went on to upack the shopping - using the bag handles to lift them onto the table & touching fridge & cupboard doors, spreading whatever contaminants were on the shopping all around the house.

People are oblivious & don't think about what they're doing, that's why I find the concept of containing it a complete joke tbh.

I'm not scared that covid will kill me off - frankly i'd be relieved if it did - but i'm scared of ending up in a hospital environment so i'm being vigilant, & nagging others to do the same. I don't want to spend a 'holiday' doing that in an unfamiliar environment.

 

I have heard, not confirmed, that a Japanese woman got the virus, recovered which was confirmed by serology, and got it again 19 days later. Corona viruses are notoriously hard to develop immunity to, and vaccines for. I wonder if this is due to high mutation rate.

If the upper bound is 18% there is likely to be a global calamity. If it persists seasonally or all year round its a dark future.

However its a good point that the actual case numbers are not known. Its not just because of reliability of testing though. I suspect many people do not get severe symptoms, and probably go undetected. This raises two issues. Containing the virus, especially if people can be infectious without symptoms for two weeks or more, is going to be extremely hard. The second is the death rate is likely to be very much lower than current numbers suggest. It may not be very much worse than a regular influenza epidemic.

I have read that most hand sanitizers do NOT stop the virus. They are better for bacterial infections. Bleach is required to stop it on surfaces, or at least is the easiest way. Most masks will not be fully protective, but wont hurt. Eye protection is probably nearly as important as masks.

Right now so much of what we think is going on is limited and will be corrected later. This might be largely a minor pandemic, if that. However, worst case scenario is catastrophic. So the range is nothing much to the worst plaque in history. We need to emphasise, fund, and pay attention to good science on these issues, just in case.

Groceries should be canned or packet food that can be cooked, in an outbreak area. No salads, or loose nuts, or bakery goods.

Many food places, including restaurants, bakeries, fast food chains and even taverns, may well have serious economic woes. The impact to the global economy could be nothing much other than fear mongering effects, all the way to a global financial meltdown. Its too soon to say.

I am also wondering what to do with my support staff help. So far my support worker has received no official advice or training. If people have to stop getting help then support agencies will be hard hit. So will cinemas, sporting events ... and elections. I hope that there is a big push to mailing in votes over the entire world if this becomes an issue.

I have been unable to decide if such a virus is a bigger or lesser threat to PWME. Our issues are complicated. Our natural tendency to isolation, being incapable of doing many ordinary activities, may assist us with reducing risk of infection.

PS I forgot the probably most serious and common means of infection in many places ... cash money. Electronic remote transfer may really catch on much more than it has.

 

But this is probably a selection bias. The intensive care unit will get the sickest patients. It says nothing about the much less sick patient numbers.

 

Do you remember where you read that?

I've seen several sources, including the CDC, say that while hand washing is always a better option using hand sanitizer does help.

That is, assuming that the hand sanitizer is applied correctly! I've seen people put some on their hands, rub a bit, and then dry their hands on their jeans!

Update: Found some more information in a Rolling Stone article:

 

No. It was about the strength of hand sanitizers, as in alcohol content. It takes a high concentration to be effective. Many are not strong enough, but work well enough on bacteria. I have read so very much on this over the last several weeks, but it all blurs together. Much of it may be incomplete or inaccurate.

Washing works by actually removing the virus particles. Hand sanitizers rely on the destruction of the virus, a different mechanism. My point was that we should not be complacent and presume that they will work. Disposable gloves are also a good option but you still have to be careful with them. One person suggested the main value of gloves was to teach you to not touch your face.

One of the issues we face is that we still don't know very much about this strain of Corona virus. The story is likely to change. Maybe most hand sanitizers work after all. I want to see that tested first though. If we can find an article comparing effectiveness of hand sanitizers against Corona virus that would help.

I wonder if you would be better buying a strong grade of alcohol rather than hand sanitizers. Of course that might not be acceptable in public.

On surfaces a strong bleach will work well. Bleach destroys organic material. I don't think that would be safe on skin.

Another option I have not heard discussed is iodine solution. That will stain the skin purple, and is often alcohol based anyway. I do not know how effective it is against this virus though.

My best guess is wear disposable gloves, place in some kind of container when disposing of them, including a bin liner, and then immediately wash your hands. I have seen the advice somewhere that hand washing should be at least twenty seconds. I am not sure if that is correct. Hands-free taps might be a good idea ... mine have to be turned.

I have heard doctors on YouTube saying masks don't often work that well, you need a high grade mask and have to be trained to use them.

If this virus becomes endemic then we may have to change a lot of things in society. In time we will figure out the rules.

 

The advice in the UK is to wash hands for at least 20 seconds and they suggest singing happy birthday to you* twice as you do so to make sure you do it for long enough.

They also remind people to wash between all fingers and not to forget thumbs and back of hands.

* Warning - if your singing is as terrible as mine then sing it under your breath. I've been reliably informed that my singing needs a hazard warning of it's own.

 

https://www.nhs.uk/live-well/healthy-body/best-way-to-wash-your-hands/

Advice with video.

This is the same video that was part of a food hygiene certificate course I did years ago.

 

Mine too.
It always amazes me that I have reasonably musical children given the quality of lullaby singing they endured....

 

Less so but it may be very good practice for when you do need to go out!

 

Is it worth doing because you'll be handling things that have come in from the outside (such as grocery deliveries)?

 

I wipe everything that comes in. I get a bowl full of hot soapy water & about 20 microfibre cloths, wrung out, & then I just sit & wipe every item, changing cloths frequently, then I shove the cloths in the machine at 80degrees. It's not 100% effective I'm sure but it reduces the risk. But then i'm just one person, so my food deliveries are small.