Coronavirus: Advice from ME organisations

Yeah i'm having the same dilemma @Trish. I have 2 people who come into the house. Fortunately they are almost as vigilant as me for themselves, & are certainly very conscientious about things while with me, following my instructions etc - they put all their belongings in one place & wash their hands after they touch anything of theirs. That of course doesn't include brushing their hair out of their faces, scratching their noses & touching their own clothes.

I can just about survive on my own, but only if I literally do NOTHING else but survival duties - food water occasional wash. No, or almost no, tv, computer, cognitive stuff. So i'm trying to decide what's sensible. I'm thinking that for the next few days/week approx. I am going to allow in only those who symptom free, with also all their cohabiting people symptom free too, and only those who are eager to follow very strict hygiene measures.

But that may change.

 

I also have a friend due to visit me tomorrow evening... i'm nervous because she works in a supermarket... She is also in her late 60s so tbh i'm also a bit scared that should the worst occur this might be the last opportunity I get to see her for a looong time, or indeed at absolute worst, last chance to see her ever. So it feels really important to me to still have her come.

 

Interested to know if @Jonathan Edwards you are self isolating yet? if you don't mind my asking

 

It's a difficult balance.

We don't know what difference having ME will make if we become infected.

Versus

If we're turning away help that means we'll be exceeding PEM thresholds in order to survive then we'll certainly be affected.

I am avoiding all unnecessary contact now. I don't have a cleaner (because it's so difficult to find a reliable one) so my only help is my husband. He still has to go into work, but I'm hoping that they'll decide to let him work from home in the next few days.

 

The current rate of notified infected people is about 1 in 100,000. If that is only a tenth then the real rate is 1 in 10,000. If you aren't in an obvious hotspot like Hertfordshire I would personally take a risk for the time being as long as carers are feeling well and have no known contacts. Things may change within a week or two weeks though.

 

Post deleted to avoid offence, which was never my intention.

 

An explosive bout of coughing is really quite possibly coronavirus just now. It seems to be the hallmark. I hope not, but I don't think you were overreacting.

 

One thing that does occur me about corona virus, & this might sound strange, but I may not know if I get it. That bothers me because I have some famIly members who are in at risk groups and others who take immunosuppressants for example.

I don't really get colds or flu - I appreciate this corona virus is different. I might have a day where I have sneezing fits or have to blow my nose a lot and feel headachy, then my ME just gets worse and I relapse. Often by the time I'm in the relapse I've forgotten I had a day with symptoms. Also I have a lot of allergies and early flu symptoms can be virtually indistinguishable.

I don't see family much, but there are some family members that are really, very vulnerable right now. I can easily avoid them, but I might also have to consider avoiding other family members who might also be in contact with them.

 

What you, Trish, are raising is also on my mind. We have nurses coming in weekly for my elderly mother, as well as massage therapists. Also, I have some help with the housework. I am just unsure what to do. These folks travel by metro and bus to get to us. I just don't know what to do, as I am looking after two very sick people.

 

I know exactly what you mean. Twice now my husband has had flu (before we started getting flu vaccine) and I do not know if I had it as well. It seems really stupid, but when he is not able to help me I can't get dressed and am exhausted by the things I really have to do like getting my pills. So I end up lying down feeling awful with my temperature all wrong but was it flu or bad ME?

 

The following article appeared this morning in The Washington Post, regarding the life span of the virus on various surfaces and in different forms: https://www.washingtonpost.com/heal...845d-e35b0234b136_story.html#comments-wrapper

 

A lot of PwME will say that they "run cold" in general and don't show much of a temperature even when they know they have an infection. I know this for myself, can feel like I'm burning up and quite ill, and will still be barely at 37.3 C. Rarely it goes higher - shakes/shivers/sweats - delerious dreams and yet temp is 37.5 C absolute max (less than 100 F).

This is fine in so much as I know how to monitor my temperature changes, but in terms of doctors response they will dismiss it - not high, not a problem.

Just curious as to other people's thoughts and experiences on this.

 

Our daughter is 30 years old, a single mum with two young children. She has been an asthma sufferer since childhood and carries inhalers, and is therefore in one of the at-risk groups. She lives 150 miles away from us.

I worry that if she contracts Covid-19 and has to self-isolate, if hits her hard because of her asthma, will the 111 service really be any use in appreciating that she might need additional, maybe urgent, medical help? And what might be best for her children during such a time?

 

To be honest @Barry and I don't want to worry you, but no I very much doubt they will. They will only provide the basics of health advice and nothing else.

There are huge gaps in the system between medical, social and personal care and even when you can get something sorted they are really inflexible.

They won't consider who will look after the kids, keep them fed, watered and entertained - especially if she has to isolate her little family.

For your own peace of mind I would talk through what her plans will be should she have to self isolate & feels unwell.

 

EDIT #2: I'm putting this second edit up at the top to make it more visible

I'm not up to posting another message on this thread so I'm editing this one again.

Thanks to folks who posted further details on the recommendations in this video. Even after only watching a few minutes I got a feeling there was little to no medical evidence behind the recommendations for supplements. Please take this video with a grain of salt, consult with your own doctor, etc.

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Dr. Nancy Klimas offers some advice for ME patients. I've only watched the first 5 minutes so far.

https://www.youtube.com/watch?v=pkGXiJ1jM14

I've never heard of xylitol nasal sprays, or cellulose nasal sprays. Does anyone know about them?

EDIT: I just watched a bit more and she makes a lot of other recommendations for supplements - I hope this is okay. I don't want to violate the "no giving medical advice" rule.

 

Excellent - thank you so much.

 

@ahimsa

idk what it does for viruses but xylitol is alleged to be bad for bad bacteria and good for good bacteria, at least for teeth. whether those studies are good idk. it can be made from beech.

as a nose spray, it keeps my nose congested while making it runny.
maybe somebody somewhere wants that feature, dunno.

as a sugar substitute, it can cause loose stools if more than tiny quantity.