Coronavirus: Advice from ME organisations

Some notes from the Klimas video, in the hope that it will help you be selective if you can't listen to it all. NB: I don't guarantee that any of this is 100% right - it was just what I was trying to type as she spoke. (EDIT: Also read what people have said about the contents below :( )

From 0.35: You are probably at a bit greater risk if exposed - one of underlying problems is that the cells protecting you against viruses are less functional because overworked.

What you can do:
- follow the guidelines - handwashing - social distancing (you're experts) - clean surfaces you might touch if you can, but be careful about chemicals because of sensitivity.
- more important that the people who are coughing and sneezing wear masks

Virus goes up nose and into airways - has to get into cell to start replicating, so try rinsing your nose - salt water spray - especially if you've been out in public. Products which coat your nose with a virus binding blocker: xylitol nose spray in US / cellulose sprays in CA and Europe (can also be used to reduce risk of flu) - look for "allergy prevention", which may still be available.

5.00: notes for asthmatics

5.30: improve your immune system - in ME, cells in overdrive and creating oxidative stress, so shuts down energy production to cope.
Improve OS: eat healthy foods if poss. Supplements: CoQ10 (ubiquinol); NAC (N-acetyl cysteine) is a good allrounder, tolerated well; glutathione - generally doesn't absorb very well except in certain formulations; Vit C; carnitine - last two found in general antioxidant supplements, but you need higher doses. Get your levels up before you drive your cells to work harder.

9.00: Then add supplements which improve cell function. B12, folate, methyl B12 or hydroxyl B12, methyl folate. Drug available in CA and Europe: Immunovir - improves energy in the cell, enhances cytotoxicity. Antivirals - reduce your susceptibility and improve outcome.

12.00: Don't panic. ME patients are really good at social isolation, but don't do it to the point of depression - stay connected, just not physically. There are things you can do. Expect this to wind down June/July because coronaviruses are seasonal and peak in March/April. If you are experiencing depression because of worries about coronavirus, contact a health professional.
 
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Thanks @Wits_End for posting an excerpt.

As much as I appreciate that she reaches out to pwME in this extra stressful situation --
to me the part where she recommends supplements and drugs for all pwME adds uncertainty about the scientific credibility of one of our important advocates.

Sorry if I'm being unfair, but I won't spend my now even scarcer money and energy to get all these drugs and supplements (except regularly taking Vitamin D and having B12 injections anyway due to deficiency repeatedly tested by my 'NHS' doctors).
 
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Nancy Klimas said:
5.30: improve your immune system - in ME, cells in overdrive and creating oxidative stress, so shuts down energy production to cope.
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Is that proven?

Also I was under the impression that one of the problems with this coronavirus was it causing a 'cytokine storm' because the immune system over reacts? So is supporting the immune system in us a good idea? I was under the impression that the science on immune function in ME is contradictory/uncertain, with some showing a weakened system & some hyperactive (in laymans terms)... so...???

I am most likely displaying my gross ignorance of how it all works. Would appreciate your comments on this @Jonathan Edwards if you have time
 
JemPD said:
Also I was under the impression that one of the problems with this coronavirus was it causing a 'cytokine storm' because the immune system over reacts? So is supporting the immune system in us a good idea? I was under the impression that the science on immune function in ME is contradictory/uncertain, with some showing a weakened system & some hyperactive (in laymans terms)... so...???
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I also get the impression the science is very uncertain and can be contradictory. It could reflect different subgroups as well.
 
Wits_End said:
Wish I'd known more about all these supplements: this is just the sort of thing you don't tend to hear about on the NHS.
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That is because there is no reason to think they are any use. There is absolutely no evidence for supplements being of value in the current situation or that people with ME need them unless they are eating a very poor diet or getting no sunlight (vitamin D).

I also do not think there is any evidence that immune cells are either underworking or overworking.

I have not looked at the video but from what is quoted this is pseudoscience that will only confuse people. I agree with @MSEsperanza's comment.

FORGET IT
 
Jonathan Edwards said:
I think it is very disappointing when scientists put out stuff based on speculation as if it were official advice.
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I think it's worse than disappointing - so much background "noise" of advice is confusing and makes it harder to identify a reliable source for sound,sensible and reasonable advice.

It's all very well for the worried well to be running about like headless chickens but we don't have the physical or financial resources.
 
Jonathan Edwards said:
There is absolutely no evidence for supplements being of value in the current situation or that people with ME need them unless they are eating a very poor diet or getting no sunlight (vitamin D).
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For anyone interested in Vitamin D:

Sun exposure
Most people meet at least some of their vitamin D needs through exposure to sunlight [1,2]. Ultraviolet (UV) B radiation with a wavelength of 290–320 nanometers penetrates uncovered skin and converts cutaneous 7-dehydrocholesterol to previtamin D3, which in turn becomes vitamin D3 [1]. Season, time of day, length of day, cloud cover, smog, skin melanin content, and sunscreen are among the factors that affect UV radiation exposure and vitamin D synthesis [1]. Perhaps surprisingly, geographic latitude does not consistently predict average serum 25(OH)D levels in a population. Ample opportunities exist to form vitamin D (and store it in the liver and fat) from exposure to sunlight during the spring, summer, and fall months even in the far north latitudes [1].

Complete cloud cover reduces UV energy by 50%; shade (including that produced by severe pollution) reduces it by 60% [20]. UVB radiation does not penetrate glass, so exposure to sunshine indoors through a window does not produce vitamin D [21]. Sunscreens with a sun protection factor (SPF) of 8 or more appear to block vitamin D-producing UV rays, although in practice people generally do not apply sufficient amounts, cover all sun-exposed skin, or reapply sunscreen regularly [1,22]. Therefore, skin likely synthesizes some vitamin D even when it is protected by sunscreen as typically applied.

The factors that affect UV radiation exposure and research to date on the amount of sun exposure needed to maintain adequate vitamin D levels make it difficult to provide general guidelines. It has been suggested by some vitamin D researchers, for example, that approximately 5–30 minutes of sun exposure between 10 AM and 3 PM at least twice a week to the face, arms, legs, or back without sunscreen usually lead to sufficient vitamin D synthesis and that the moderate use of commercial tanning beds that emit 2%–6% UVB radiation is also effective [6,23]. Individuals with limited sun exposure need to include good sources of vitamin D in their diet or take a supplement to achieve recommended levels of intake.

Despite the importance of the sun for vitamin D synthesis, it is prudent to limit exposure of skin to sunlight [22] and UV radiation from tanning beds [24]. UV radiation is a carcinogen responsible for most of the estimated 1.5 million skin cancers and the 8,000 deaths due to metastatic melanoma that occur annually in the United States [22]. Lifetime cumulative UV damage to skin is also largely responsible for some age-associated dryness and other cosmetic changes. The American Academy of Dermatology advises that photoprotective measures be taken, including the use of sunscreen, whenever one is exposed to the sun [25]. Assessment of vitamin D requirements cannot address the level of sun exposure because of these public health concerns about skin cancer, and there are no studies to determine whether UVB-induced synthesis of vitamin D can occur without increased risk of skin cancer [1].

More here: https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/
 
MeSci said:
For anyone interested in Vitamin D:

Sun exposure
Most people meet at least some of their vitamin D needs through exposure to sunlight [1,2]. Ultraviolet (UV) B radiation with a wavelength of 290–320 nanometers penetrates uncovered skin and converts cutaneous 7-dehydrocholesterol to previtamin D3, which in turn becomes vitamin D3 [1]. Season, time of day, length of day, cloud cover, smog, skin melanin content, and sunscreen are among the factors that affect UV radiation exposure and vitamin D synthesis [1]. Perhaps surprisingly, geographic latitude does not consistently predict average serum 25(OH)D levels in a population. Ample opportunities exist to form vitamin D (and store it in the liver and fat) from exposure to sunlight during the spring, summer, and fall months even in the far north latitudes [1].

Complete cloud cover reduces UV energy by 50%; shade (including that produced by severe pollution) reduces it by 60% [20]. UVB radiation does not penetrate glass, so exposure to sunshine indoors through a window does not produce vitamin D [21]. Sunscreens with a sun protection factor (SPF) of 8 or more appear to block vitamin D-producing UV rays, although in practice people generally do not apply sufficient amounts, cover all sun-exposed skin, or reapply sunscreen regularly [1,22]. Therefore, skin likely synthesizes some vitamin D even when it is protected by sunscreen as typically applied.

The factors that affect UV radiation exposure and research to date on the amount of sun exposure needed to maintain adequate vitamin D levels make it difficult to provide general guidelines. It has been suggested by some vitamin D researchers, for example, that approximately 5–30 minutes of sun exposure between 10 AM and 3 PM at least twice a week to the face, arms, legs, or back without sunscreen usually lead to sufficient vitamin D synthesis and that the moderate use of commercial tanning beds that emit 2%–6% UVB radiation is also effective [6,23]. Individuals with limited sun exposure need to include good sources of vitamin D in their diet or take a supplement to achieve recommended levels of intake.

Despite the importance of the sun for vitamin D synthesis, it is prudent to limit exposure of skin to sunlight [22] and UV radiation from tanning beds [24]. UV radiation is a carcinogen responsible for most of the estimated 1.5 million skin cancers and the 8,000 deaths due to metastatic melanoma that occur annually in the United States [22]. Lifetime cumulative UV damage to skin is also largely responsible for some age-associated dryness and other cosmetic changes. The American Academy of Dermatology advises that photoprotective measures be taken, including the use of sunscreen, whenever one is exposed to the sun [25]. Assessment of vitamin D requirements cannot address the level of sun exposure because of these public health concerns about skin cancer, and there are no studies to determine whether UVB-induced synthesis of vitamin D can occur without increased risk of skin cancer [1].

More here: https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/
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I have always had low vitamin D (in the 30s range) when normal has to be between 50-150 I believe. At one point my mum went down nearly to single digits. We are south Asian. I’m constantly on a high dose of vitamin D to keep my levels up.

My partner, who is white, he has never had low vitamin D and has never had to take supplements, there is a correlation with skin colour I believe.
 
New post from Kekule today:

https://www.kekule.com/

The 6 rules of the pandemic are not translated yet, so I've translated it below. I've sent him a copy of my translation and asked his permission to post it here. I don't expect he'll mind, but if he does I can remove it again. In the meantime:

The rules of the pandemic

As with any epidemic, the first question is how great the danger is and how much we have to change our lives in order to respond appropriately. The World Health Organization estimates the lethality rate for infections with the new coronavirus for China at 0.7 percent. For Germany, the basis for the risk assessment is 0.5 percent, corresponding to one death per 200 infected persons. This means that the disease known as "Covid-19" is about ten times more dangerous than the normal seasonal flu, but much more harmless than the lung disease SARS or even Ebola, which occurred in 2003, where the mortality rates were 10 and 70 percent respectively. Since the new coronavirus is also less contagious than influenza or measles, a fatalist might well decide to forego personal protective measures and take a relaxed approach. The statistical risk of death for an otherwise healthy person, if current estimates are correct, would be similar to that of one parachute jump per day. However, if you consider the significantly higher risk for people with chronic diseases and the elderly (over 65 years of age), there is no getting around following the rules of the pandemic.

In contrast to the official advice "avoid shaking hands", "cough in the crook of your arm" and "wash your hands frequently", the following recommendations take into account the concrete, situation-related risk and require considerable self-discipline. Those who internalize the six rules and follow them consistently can safely ignore the flood of well-meaning tips for self-protection. If we know our enemy and focus on the essentials, even a potentially deadly virus becomes just a danger like any other.

1. do not get too close to other faces.

The corona virus targets the mucous membranes of the eyes, mouth and nose. It can only enter the body through these. Healthy skin, on the other hand, is impenetrable to the virus. According to current knowledge, there is also no transmission via the air we breathe (aerogenic, i.e. airborne over longer distances). It only becomes dangerous when droplets are sprayed into the face by a person speaking, coughing or sneezing. The secretions fly a maximum of one metre when speaking and two metres when coughing or sneezing. Additional protection against "droplet infection" is provided by normal glasses and a simple surgical mask (mouth and nose protection) or a cloth tied over the mouth and nose. Anyone who could not avoid a cough or sneeze in time should change the mask immediately and disinfect the face or wash it with soap. A cloth is ready for use again after washing at 60 degrees. Virus-containing secretion on skin, hair or clothing is - as unappetizing as it may sound - not dangerous as long as it does not get on the mucous membranes.

2. wash your hands before touching your face or eating anything.

Corona viruses can survive on clothing, skin, hair and other surfaces for several hours (exceptionally even days). For example, if you touch a handle on the bus with fresh secretion from a sick person and then rub your eyes or touch your food with your hands, you can become infected by a "smear infection". Outside the home, therefore, you should never touch eyes, nostrils or lips with unwashed hands. This is easier said than done. People unconsciously touch their faces about ten to twenty times per hour. Neuropsychologists believe that these spontaneous self-touches - which occur in all cultures and also in monkeys - serve the memory function and emotional stabilization. Corona viruses make use of this reflex. To suppress it consistently is no easy task. Those who fail to do so can put on a mouth and nose protector as a reminder.

3. Only hug people with whom you want to exchange viruses.

If an infected person's skin or hair comes into contact with the eyes, mouth or nose of a (still) healthy person during a hug, this is a celebration for pathogens of all kinds. Caring in times of the coronavirus therefore requires strict abstinence from cheek kisses and social hugs. Kisses between partners and with one's own children, on the other hand, are allowed, because family members living in the same household will sooner or later infect each other anyway (this is of course only true if there is no concrete suspicion of a Covid-19 infection). When visiting grandparents, however, you should consider carefully whether you want them to suffer from a life-threatening disease.

4. consider public indoor areas as contaminated.

In public transport, restaurants, shops and other generally accessible indoor areas, corona viruses can be present on any surface. Anyone returning to their own four walls from there should consider outer clothing and hands as contaminated, i.e. immediately hang up their coat in the cloakroom and wash their hands. If your hair could also be contaminated (e.g. by the headrest in the train), it should be washed before going to bed at the latest. Outdoors, on the other hand, the viral load of surfaces is lower because the pathogens are diluted and inactivated by environmental influences.

5. avoid contact with others if you have cough or fever.

In the coronavirus pandemic, no one should go to work, school or daycare, use public transport or go to areas with a lot of people if they cough or have a fever (contrary to what people say, a runny nose is not one of the typical Covid-19 symptoms). Day-care centres in particular must strictly observe this rule, because - according to current knowledge - children are more often only slightly ill, but can excrete the virus. Anyone who has to go shopping with a fever or cough or use public transport should wash their hands beforehand and wear a surgical mask or a cloth over their mouth and nose. Both must be dry, otherwise droplets containing the virus are produced when you breathe out.

Stay calm!

If you follow these rules, you can most likely avoid getting acquainted with the new corona virus. Additional measures hardly increase protection and make life unnecessarily complicated - after all, we are not dealing with Ebola and Co. (other considerations may apply to certain risk groups). In everyday life, neither the infection protection masks intended for medical staff (FFP2 respirators) nor larger supplies of disinfectants are needed. Anyone who falls ill these days should remember that common colds and flu are still much more common than Covid-19, and anyone who gets infected usually has a more than 99 percent chance of survival.
 
Wits_End said:
9.00: Then add supplements which improve cell function. B12, folate, methyl B12 or hydroxyl B12, methyl folate. Drug available in CA and Europe: Immunovir - improves energy in the cell, enhances cytotoxicity. Antivirals - reduce your susceptibility and improve outcome.
Click to expand...

Immunovir brought on a terrible relapse and reduced my baseline significantly.
 
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Jonathan Edwards said:
That is because there is no reason to think they are any use. There is absolutely no evidence for supplements being of value in the current situation or that people with ME need them unless they are eating a very poor diet or getting no sunlight (vitamin D).
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I wasn't thinking about the current situation, but more generally. You're saying they're not useful generally either?
 
A question @Jonathan Edwards please.

I appreciate that for bacterial infections antibiotics can in many cases kill off the bacteria, and so assist the patient's recovery.

For viral infections am I right in thinking that there are no medicines that can directly disable the virus itself? Is medical care limited to helping the patient best-cope with the consequences of the disease, and in so doing buy the patient time and physical resources so their own body can get to grips with fighting the infection?
 
ahimsa said:
I've never heard of xylitol nasal sprays, or cellulose nasal sprays. Does anyone know about them?
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No, but my pharmacy was selling some sort of salt inhaler, I think it was, (does that make sense?) which was supposedly good for allergies and so on.
 
Barry said:
A question @Jonathan Edwards please.

I appreciate that for bacterial infections antibiotics can in many cases kill off the bacteria, and so assist the patient's recovery.

For viral infections am I right in thinking that there are no medicines that can directly disable the virus itself? Is medical care limited to helping the patient best-cope with the consequences of the disease, and in so doing buy the patient time and physical resources so their own body can get to grips with fighting the infection?
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I have just listened to a podcast with Amesh Adalja (bio) of the Johns Hopkins Center For Health Security, who mentioned that some drugs are currently undergoing phase II trials to hopefully be approved or repurposed for use against the COVID-19 pathogen. In particular he mentioned:

Remdesivir (previously tested against ebola)

Chloroquine (antimalarial drug)

(I have also read that Lopinavir/ritonavir (HIV/AIDS drug combination) is being tested)

It sounds like the timeline is on the order of several months to roll any antiviral treatments out if successful (although in the meantime he said some patients are being treated with Remdesivir via 'compassionate use' - which I take to mean 'nothing to lose at this point').

So that is another reason to 'flatten the curve' - in several months there may be drugs shown to improve outcomes.

[EDIT: if anybody would like to listen to the podcast, send me a message and I will send you the link. It is about 1 hour. There are some thoughts regarding American politics so I think it would be best not to link directly in the forum.]
 
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Barry said:
A question @Jonathan Edwards please.

I appreciate that for bacterial infections antibiotics can in many cases kill off the bacteria, and so assist the patient's recovery.

For viral infections am I right in thinking that there are no medicines that can directly disable the virus itself? Is medical care limited to helping the patient best-cope with the consequences of the disease, and in so doing buy the patient time and physical resources so their own body can get to grips with fighting the infection?
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Specific antivirals can disable viruses. There are not many of them and they are mostly nit very effective but those for HIV are pretty good.

An antibiotic will kill a bacterium by, for instance giving it false material for building a cell wall (penicillin). An antiviral can do something similar e.g. giving false material for replication of nucleic acid (idoxuridine).

The problem with viruses is that almost all active metabolic pathways are performed by the host for it and so you have to poison processes performed by the host. So the magic bullet idea of poisoning microbe rather than host is less possible. However, there are still some ways to do it. I think protease inhibitors block an enzyme that the host builds to HIV instructions but which only does a job for HIV so can be blocked without blocking host needs.
 
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