YouTube video transcript: COVID-19 & ME/CFS NSU Institute for Neuro-Immune Medicine, Nancy Klimas, M.D.
Full Transcripts below:
Hi, this is Dr Nancy Klimas! I’m recording this from Nova Southeastern University. As you may know, I’m the Director of the Institute for Neuro-Immune Medicine at Nova, and at the Miami VA Hospital. I’ve been in this Myalgic Encephalomyelitis world for many decades, and I wanted to share my thoughts about what you should do about COVID-19 if you have ME.
The first thing is to realise that you probably are at a greater risk if you’re exposed, because one of the underlying problems in ME is that the cells that protect you from viruses are less functional. Most of you have plenty of these cells, but they’ve been working so hard that they’ve depleted their resources and they’re not able to do as much if they come across a virus. This mostly has been bothering you because you like to reactivate old viruses, but you should be a little more at risk for community-acquired infection. It’s not the same as say, cancer, or some really profound immunocompromise…you’re modestly compromised. But you should still take extra precautions.
So there are things you can do.
The first thing is the thing(s) that all of us are doing:
* Reading the guidelines as they come out and paying attention
* Hand washing
* Avoiding standing right up next to people who may be infected (This is called ‘social distancing’ – it’s going to be the new phrase of 2020, and you’ve been doing this for many, many years, you’re good at it. The idea is to stand about 6 feet (2 metres) away from other people if you’re going to be out and about in the public).
* Clean surfaces that you’re able to clean, that you will be touching, particularly in your own home, in your car, things that the public would touch (doorknobs and the like). But in your case be careful about chemicals, because you’re chemically sensitive. So use soap and water, or use alcohol (over, say, Lysol, or that type of thing). But keep things clean.
2:22 Should you use a mask? A mask works better protecting people who are sick from exposing others – it’s better at catching droplets going *out*. But it does *something*, you can wear a mask or something over your face, it might reduce your risk a little bit. But it’s more important that people who are actually coughing and sneezing wear a mask.
2:50 You might want to know a little bit about the virus lifecycle, because it goes up through your nose and into your airways. And there it attaches to the cells (the epithelia of the nose, or the lung, or the brachial tubes), and it has to attach to a cell and get into a cell before it can start replicating. So anything you do that rinses off the place where the cells would be likely to have some viruses trying to attach, works a lot like hand washing, but for your nose. So keeping salt water sprays and spritzing your nose and rinsing out your
nose (particularly if you’ve just been out in public and you’re worried about what you might have inhaled, or if you’re – you know – having to travel around and people are sneezing around you) you could rinse a lot, that might prevent some of the viral entry that way.
3:35 There are some products that try to coat – particularly your nose, they really don’t get into your airway, but they do coat your nose with something that can block viruses from binding – there’s some nose sprays in the United States that are over the counter that use a sugar called Xylitol. So you can google that one (Xylitol nose spray) and you might find a product that you could keep in your product and spritz up your nose. In Canada and Europe you have cellulose sprays (lots of them, there are many different brands) and that’s just a starch, you spray it up your nose and it coats the mucosa and prevents viruses from binding. You might already be using that in the flu season to try to reduce your risk of flu. That is marketed under many different names, as allergy preventions as well as anti-viral types of things. I noticed that, ah, I went online and the ones that say “prevents colds and flus” are already off the shelf, but the ones that are for allergies seem to be in stock. So, same exact thing, just different boxes, you could use the one that says ‘for allergies’ and it would work just the same. So that works like a barrier. So rinsing, barrier for your nose, makes good sense.
4:50 The next thing is that the people that have a reason to be a little more vulnerable to viruses entering are asthmatics that aren’t keeping up with their medicines, because again their airways get inflamed and the epithelia are more vulnerable to infection. So if you are an asthmatic, take your medicines the way they’re prescribed to reduce the lung inflammation and the bronchial tube inflammation so that this virus doesn’t have as good a chance of getting in. So asthmatics, take care of your asthma.
5:20 Now the other thing you can do to try to help is to improve your immune function. This is probably the question I get asked -most- of the time. I’m an immunologist that specialises in ME, so you can imagine that people come and ask me this very question all the time. And this is a good time to ask!
5:36 There’s two things wrong with your cells that are anti-viral.
One [problem] is that they have been working so hard – they’ve been driving the ‘on’ button so hard – that they’ve used up their nutrients they need to make the things you use to kill viruses. [So problem one] is that they’re sort of in overdrive.
And the other [problem] is that their energy pathways have been impaired, because the cell that’s turned on all the time is creating oxidative stress. And the way this cell deals with that, to protect itself, is to shut down energy production so you don’t make so much oxidative stress. So in essence these are low-energy cells. It’s a lot like you feel all over, your immune systems feel the same way. So think about that for a moment. What can you do to improve that?
6:25 Well the first thing you can do is improve your oxidative stress, uh, nutrients. A LOT.
Ideally you do this by eating really healthy foods. But most of you don’t have the energy to stand up in your kitchen and chop-chop-chop all the green stuff you need to chop up and eat to maintain the antioxidant levels that you need. So you are pushed on to using supplements. Supplements work great, there are plenty of good ones. Our gold standard ‘core’ supplements include
* CoQ10, in the form of Ubiquinol Dosings vary, but it wouldn’t be unreasonable to take 200mg of Ubiquinol during a high stress time, to try to get your levels back up. And then drop down to 50mg – 100mg a day. So maybe a month or two of the high dose before you drop down to the normal dose.
7:17 * NAC (N-acetyl cysteine) NAc / N-acetyl cysteine is a precursor of glutathione. Glutathione’s THE number one antioxidant in your body. But NAC is it’s precursor and it has the advantage of penetrating all of the tissues well, including the brain. So NAC’s a great supplement to take. Typically the dose in this country [USA] is around 600mg, once or twice a day. That might be a little low in this situation, but it’s tolerated well and it’s a good dose. Don’t take it at bedtime, it can keep you awake.
7:54 * Glutathione Glutathione is the other supplement people take. It’s a good one [but] it doesn’t absorb very well, that’s why so many people rely on NAC. But Glutathione has some special formulations that do absorb well. It’s worth doing your google searching for that. But the Liposomal forms tend to be well absorbed, so that’s another thought.
8:16 * Vitamin C & Carnitine And then good old vitamin C and Carnitine. Two good antioxidants. So some little combination like that. Normally the Carnitine and vitamin C come in some sort of antioxidant tablet that’s got a lot of other stuff in it. But you need to take over and above that – the additional Ubiquinal, the additional NAC or Glutathione to get your antioxidant levels up.
8:42 You want to do this FIRST, BEFORE you drive the cells to work harder, because if you drive the cells to work harder they will…crash and burn. So, get the antioxidants on board, THEN add the supplements that actually improve cell function. These tend to be things like B12 and folate, things that drive energy. B12 and folate – maybe 20% – 30% of people don’t have the right genetics for having the enzymes that metabolise them into the right form. And so most people are taking methyl B12, or hydroxy B12, or methyl folate because [they] work better in that situation. No harm in doing those, you don’t have to know what your genes are to take B12 and folate in the methyl form.
9:33 There is a drug available in Canada and Europe called Imunovir. It’s basically something called isoprinosine – an amino acid that is part of the bioenergetic pathway, it improves energy in the cell. It’s got placebo control data in ME, that it improves cytotoxic function. Uh, small study, but it was one that I rely on heavily. We’ve done hundred of patients
since the series and documented that it is indeed true that you can enhance cytotoxicity with Imunovir. In the United States we don’t have Imunovir FDA approved, so we use an over the counter ‘cousin’, Isoprinosine or Inosine. This is bought over the counter, it can be bought in online drug stores (be careful that you use good quality sources). And you can use the labelled dose. One caution: these are amino acids that go down a degradation pathway to uric acid, and uric acid can cause gout or renal [kidney] stones (uric acid renal stones). So you have to hydrate well if you take these, and I tell patients to take two days off a week and let the levels fall down, and then go back [on it]. So five days a week on those. Those are good anti-virals, they’re marketed in the UK / Europe and Canada as anti-virals because they’ve been shown in good studies to suppress herpes-family viruses. And guess what? Epstein-Barr virus is a herpes-family virus.
11:07 However, Coronavirus is not. It’s an RNA virus, a different kind of virus. Still, the way these drugs work is to make your anti-viral immune system work better. So they should also be effective [against Coronavirus]. And in fact, there’s a lovely paper on Isoprinosine for upper respiratory tract infections, which coronaviruses cause 30% of upper respiratory tract infections that are seasonal. And it showed good effectiveness. So I think it’s reasonable to say that this is an anti-viral you could take that would reduce your susceptibility and perhaps improve your outcome should you become infected.
11:51 So I’m going to conclude this little chat to say first, don’t panic. The public health systems have responded aggressively, ahead of this infection, to contain the community-acquired versions of these infections. We don’t anticipate massive numbers of exposures or infections. [Plus] there’s no one better than an ME patient at social isolation. While I don’t recommend it, you may as well do it now, you’re already good at it. But you also should be careful to not isolate yourself to the point of depression. So, you know – you’ve got a telephone, you’ve got your computer magic gadgets that [you use] to talk to your friends: reach out, stay socially connected. Just don’t physically cough and sneeze at each other. But please don’t panic. Do take care of yourselves. And spread the word that there ARE things you can do, that you shouldn’t be freaked out right now, you should just be being rational and doing rational things to reduce your risk.
13:04 And then expect this whole thing to wind down in about June or July [in the USA] because these coronaviruses (COVID-19 is a coronavirus) have a seasonal rate of exposure that peaks in March and April [in the USA] and then fades back down over the course of the next two months.
13:23 Lastly, if you ARE experiencing anxiety or depression because you’re so afraid of COVID-19, PLEASE reach out to a professional and take care of yourself. This is not a time to let your anxiety to take charge. It will cause your ME to relapse, and that will make you feel really, really bad. So don’t do that.
Okay everyone, I wish you the best! Take good care of yourselves!
OH! And we’re going to have a conference / series of webcasts (check our webpage) in May to celebrate ME awareness month. So, stay informed. Take care!
Transcribed by S. Phelps to help other ME sufferers who need information in a written format. This transcription has not been endorsed by the NSU Institute for Neuro-Immune Medicine or by Nancy Klimas, M.D.