The COVID Vaccine & CFS/ME, A Professional Recommendation

I received this email recently from Dan, a member of my local ME&CFS community.. The topic, as I’m sure you’ve guessed, is in regards to vaccinations and ME&CFS… Dr. Nancy Klimas’ gives her opinion on this very topic – her message is highlighted in blue.

Warning: lots of technical jargon. If you can understand it all, please translate when this means to us lesser mortals… 😉 I do think the Doc is basically saying unless to react to vaccines you should get the vaccine but the alternative could be, potentially, a long, slow, painful death, alone, without friends or family.

To Members of the ME/CFS Community –
Our recent fundraising for Dr. Nancy Klimas’ ME/CFS medical research at the Institute for Neuro-Immune Medicine (INIM) at Nova Southeastern University raised over $4,200 in a couple of weeks.
As our fundraising efforts were underway, Nancy was formulating her thoughts on how those of us with ME/CFS might consider getting the vaccine.
She recently sent me the following:

Hi Dan – I put together my opinion and hopefully its posted on our web page (https://www.nova.edu/nim/index.html) today. Nancy
To vaccinate or not – with ME/CFS
I have been asked this question dozens of times over the past week. This is my opinion –
COVID kills people. It kills people with over activated and damaged immune systems preferentially – and that is what ME/CFS is all about. So while there certainly is a risk of an ME relapse with these hyper reactive vaccines (the first wave to be released) , you have to weigh the possibility of an ME relapse against the risk of death from COVID.
You can mitigate the risk in a number of ways – just the way you do when you feel a relapse coming on. Before the vaccine make sure you are taking enough antioxidants, particularly NAC or glutathione and coQ10. The big mediator of post vaccination relapse and immediate reactions is mast cell activation. If it happens immediately, that is anaphylaxis, but if it happens slowly and low grade over days the mediators mast cells release can drive a classic ME/CFS relapse. So, take an antihistamine before and for several days after the vaccine – the strongest one you tolerate. (Benadryl is one of the strongest, Zyrtec is another good choice). There are many mast cell stabilizers, watch Dr. Maitlands excellent lecture on our web page from the recent conference we sponsored on the subject if you want to know more: Managing the Syndrome Soup: POTS, EDS, MCAS & ME/CFS https://www.nova.edu/nim/events.html
There are natural supplements that act to block or clear histamine and stabilize mast cells such as alpha lipoic acid, ascorbic acid, B6, diamine oxidase enzymes (DAO), luteolin, N-acetylcysteine (NAC), Omega-3’s, riboflavin, SAMe, quercetin, and natural sources of theophylline like green and black teas. If you have been diagnosed with mast cell activation syndrome it would make sense that your risk of an immediate reaction to any vaccine should be higher, though the data on the risk to people with mast cell activation syndrome or prior vaccine allergic reactions is not yet known with the COVID vaccines. I suspect we will know fairly quickly , with millions of doses already administered. So you may want to wait (taking all of the COVID precautions very seriously) and when you do take the vaccine plan to stay in the medical setting for at least 30 minutes, consider several hours, to be in a safe place if you do have a reaction. In this special circumstance premedication with a steroid, the same way we premedicate people who need a CT scan with iodine contrast dye, could be provided by your physician.
Please note that if you take the vaccine you should take the whole dose, and the current vaccines, Pfizer and Moderna, should be administered twice. It is not yet known how long the immunity will last, but there are blood tests that look at antibody levels available. They came to market very quickly, we will know more about the quality of the antibody tests over the next few months. Most importantly, vaccination is not 100% (in fact the two initial vaccines trials were 95% effective in preventing or reducing the severity of infection) So vaccination does not exclude strict distancing guidelines, and the masks continue until “herd immunity” levels of vaccination have been reached (70% of the population)!
Of course, these recommendations are simply my opinion, and we will know a lot more about safety in the coming months – but 30,000 plus folks took the vaccines in the trials (that’s a lot) and you have to be moved by the photos of health care professionals lining up to receive their vaccine. Is there a risk? Yes. Certainly more a risk of ME/CFS relapse than anaphylaxis, which should be manageable. Is it worth it? Your decision, weighing all that you can find out. But more than 330,000 Americans have died and the new strain of the virus is likely to make our current rate of infection go much higher. Please take this seriously.
More than you wanted to know:
Partial vs. absolute protection
Most vaccines offer incomplete protection against infection and this is likely to be the case with SARS-CoV-2 vaccines as well. However, even partial protection will be of benefit both to patients and the general public. Partial protection may mean that most but not all persons develop immunity, or that some recipients develop weak immunity that makes the consequences of infection less severe than they would have been otherwise.
(December 2020 update: Information from the American College of Rheumatology Regarding Vaccination Against SARS-CoV-2).
Here are the official recommendations:
The American College of Allergy, Asthma, and Immunology (ACAAI) has issued guidance for physicians and other providers related to the risk of an allergic reaction following vaccination with an mRNA-based coronavirus disease 2019 (COVID-19) vaccine.
ACAAI’s recommendations are in line with guidance issued by the Centers for Disease Control and Prevention. Specifically, that patients experiencing a severe allergic reaction after getting the first shot should not receive the second shot.
In addition, the ACAAI COVID-19 Vaccine Task Force recommends the following guidance for physicians and other providers:
The mRNA COVID-19 vaccines should be administered in a healthcare setting where anaphylaxis can be treated. All individuals must be observed for at least 15 to 30 minutes after injection to monitor for any adverse reaction. All anaphylactic reactions should be managed immediately with epinephrine as first-line treatment.
The mRNA COVID-19 vaccines should not be administered to individuals with a known history of a severe allergic reaction to any component of the vaccine. Although the specific vaccine component causing the anaphylaxis has not been identified, polyethylene glycol is one of its ingredients and has been known to cause anaphylaxis.
Data related to risk in individuals with a history of allergic reactions to previous vaccinations and/or mast cell activation syndrome/idiopathic anaphylaxis is very limited and evolving. A decision to receive either of the mRNA COVID-19 vaccines that are currently approved for Emergency Use Authorisation by the US Food and Drug Administration should be undertaken by the individual, along with their physician or other provider administering the vaccine using their professional judgment balancing the benefits and risks associated with taking the vaccine.
People with common allergies to medications, foods, inhalants, insects and latex are no more likely than the general public to have an allergic reaction to the mRNA COVID-19 vaccines. Those patients should be informed of the benefits of the vaccine versus its risks.
The mRNA COVID-19 vaccines are not live vaccines and can be administered to immunocompromised patients. Physicians and other providers should inform such immunocompromised patients of the possibility of a diminished immune response to the vaccines.
Reference: https://acaai.org/news/american-college-allergy-asthma-and-immunology-updates-guidance-risk-allergic-reactions-mrna
SOURCE: American College of Allergy, Asthma, and Immunology
The American College of Rheumatology offers additional guidance for people on immunosuppressive therapy, and discussed in some detail the issues around vaccination and herd immunity. Here is the link:
https://www.rheumatology.org/Portals/0/Files/ACR-Information-Vaccination-Against-SARS-CoV-2.pdf
Still, I think 2021 will be a happy new year. The most vulnerable should see the vaccines available in the coming weeks! And yes, it will take a lot to get our citizens to the level of herd immunity with mostly the logistics in the news, but really it is denial of the risk of COVID 19 allowing this head in the sand thinking. Take a hard look at the stats and your risk. Then make a smart decision.
Nancy

ScoutSeeds!

Buy Scouts Seeds and support Local Scouts today! 

The 2021Scout Seeds fundraising campaign is running from February 1st until March 31st, 2021.

Scouts Canada has partnered again with our 100% Canadian supplier Make It Sow to offer an exciting variety of seed kits. This allows customers to have fun learning more about growing their own garden all the while supporting Local Scout Groups!!

Groups will receive 40% of the retail price as profit and more than 5% will be allocated to the No One Left Behind (NOLB)program to help subsidize the Scouting cost. 

OUR PRODUCTS: 

KIT 1: Full Season Garden- Regular price:  $40.00 https://scoutseeds.ca/collections/all/products/kit-1-full-season-garden 

KIT 2: Gourmet Chef’s Garden – Regular price:. $45.00 https://scoutseeds.ca/collections/all/products/kit-2-gourmet-chefs-garden 

KIT 3: Flower Power Garden- Regular price: $45.00: http://scoutseeds.ca/collections/all/products/kit-3-flower-power-garden

KIT 4: Kids Garden Plot – Regular Price:  $10 https://scoutseeds.ca/collections/all/products/kids-garden-plot

KIT 5: Strange & Fun Garden Plot – Regular Price $10 https://scoutseeds.ca/collections/all/products/kit-5-strange-fun-garden-plot

**If you are local to me (Durham Region, Ontario), and would rather not pay shipping, you can purchase directly with the me at the 13thOshawa as we are sending in group orders.

Happy Birthday!!

Today would have been the 164th birthday for Lieutenant General Robert Stephenson Smyth Baden-Powell, 1st Baron Baden-Powell, Founder of the Boy Scout Program. In Canadian Guiding it is Thinking Day, but in Canadian Scouting it’s Founder’s Fay

Happy Birthday BP!

Slacking

I just looked & saw when I posted last.. I didn’t think it was that long ago, but evidently it was..

I’ve been kinda … low…blue… I usually do after the holidays, but it rarely lasts longer… I’m slightly freaked out… I don’t think it’s ever reached March… *AND* I’ve been snacking my feelings away.. not a good way, cuz now my weight has crept up.. & after maintains my second weight-loss goal for several months, I’ve past that reward level.. I need to eat less & exercise more.

Grocery Shopping During COVID

On February 26, 2010 I shared a post by Misty Robert abou groveryt shopping with Chronic Illness.. Unfortunately it’s no longer accurate due to changes in our world during this pandemic. So, below is an updated version..

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For healthy people, getting groceries is no big deal. even comparatively with COVID. But for people like us, with Fibromyalgia (FM) and CFS/ME, getting groceries can be as challenging as climbing Mount Everest!

Shopping takes an incredible amount of energy, as it can be hugely exhausting. The cognitive impact from needing to be focused and self-aware of what you & others are doing is super stressful. The Environmental factors including bright lights, crowds of people, with scent & audio sensitivities in the alert don’t help this situation. Add in COVID issues including the need for socisl.distancing, face masks and those who do not follow those rulez. These factors can, both in part or as a whole, exasperate everything sending you into a tailspin and a not so lovelyflare..

I’ve modified the tips from the previous article. They are meant to help limit the impact your grocery shopping because on your physical mental and emotional health.

Grocery List

Still a great idea. If you can, purchase for a longer term tell him that the number of trips you need to make to the grocery store. I keep a running grocery list of items that are pretty much standard for any trip to the grocery store but it’s also for items that I run low on or even run out of.

Organize your list. Try and organize it so that a coincides with your store so that all your produce is near the top of your list and then if your meat section is next then your meat products and if your bakery is next then your bakery items need to be listed and so on and so forth. It saves time because there is a lower likelihood of needing to backtrack. It makes it easier to follow the arrows on the group.

Plan Your Time

You know your store & you know where things are. In organizing your list it can help keep you focused so you can spend the least amount of time in the grocery store.

Plan your timing so that you schedule your trip when your energy levels are at their highest. Also consider the times that grocery stores tend to be slower, so avoid during the dinner hour.. The original article also suggested in the morning. With covid less people are working during the day so this time frame may be not as optimum. Many stores however do have a time frame such as 7:00 a.m. to 8:00 a.m. for seniors and people with disabilities. You can take advantage of this.

Additionally there are stores that do have significant lineups such as Costco that also give priority to persons who are working in healthcare or who have disabilities. I have taken advantage of this several times when shopping for myself and my parents.

Parking

Ideally you will have a accessible parking permit that lets you park in the accessible or wheelchair parking spots. If you don’t you may want to consider applying. It is fairly simple. Download the form from your Provincial or State website, have your physician fill it out and submitted it to your provincial services office or the Department of Motor Vehicles. A temporary permit is issued immediately.

For those who do not have a permit, and are unable to find a spot close, try parking near the cart returns. This will save you unnecessary steps later when your energy levels will be at their lowest. It is no longer recommended to grab a cart on your way in the store as it has not been cleaned and could be covid contaminated.

Choose Your Stores

First, ome stores are taking covid precautions a lot more seriously than others. I have found this in some stores. For those whose actions are more lackadaisical than others, I haven’t bothered to say anything but have simply walked out and left, never to return. I am not taking that kind of a risk with my health.. with my life..

Second, by sticking to stores you already know, you know where everything is.. You can avoid some of the unnecessary stress and wear & tear on your sore muscles. If you must shop at a new store, ask for a map. Some stores may have a little map located on the shopping cart. Take a moment to glance over your map, preferably sitting down with a cup of coffee before you get to the store.

Grocery Carts & Wheelchairs

How many times have you gone into a store only to find half way through that the cart you’re trying to push is out of alignment…or is missing a part? If you’re like me, this has happened one too many times. Be sure to check your cart out thoroughly before taking it too far. You’ll thank yourself later!

If you’re thinking of just grabbing a small basket instead of a cart, Don’t. It only takes one or two heavy items to make your arms and shoulders cry out. Plus by pushing a cart it gives you something to shift your weight on if you get tired.

Another idea for grocery shopping is to use a motorized buggy. Even if you aren’t in a wheelchair normally, taking advantage of this option can save you pain and agony later.

If you decide not to use a motorized cart, make your trip short. Previously, the recommendation was to take breaks. Many stores have a luncheon area or even a built in restaurant. Unfortunately, it’s no linger recommended &, in some places, illegal that you have a sit down with have coffee and a snack. Normally it would have been a chance to rest & recuperate. Limit the amount of time you are in doors shopping lower the risk of exposure..

If you walk to the store, take your own grocery buggie to wheel your groceries home. The stores don’t like you to take the carts all the way home in may cases it’s not even possible. So if you do have that heavy bag, you are not cayrying it.

At the Check-Out

Most grocery stores where I live now have a queue system , so you will get the next available cash. You got that next one that is available.

Addittedly, the less time you have to wait in line the better. Sometimes if you explain to the staff that you aren’t feeling well they might allow you to bump up the queue.

Card readers can be confusing to everyone, so don’t get flustered if you have some trouble. Ask the clerk for help and ignore the people grumbling behind you. Perfectly healthy people have trouble every day! And for convenience, activate your tap especially with covid so that you do not have to constantly sanitize your card. I think I may have fried the chip in my debit card. I’ve had to clean it a number of times because some places do not have tap, like Micheal’s. So, the tap no longer works.

Bag It

A lot of places no longer have people who bag stuff with your own bags. Costco does not permit reusable bags at all. Some stores like Dollarama require you to put your items on the counter and after being scanned to then remove them from the counter and put them in your own personal reusable bag. Discount grocery stores tend to not be have any changes in their policies I should normally be packing your own items. Summer stores do request that you do not place your reusable bags on the belt.

I believe the higher end grocery stores will still take your bags to bag your items. In that case, ask the checker or bagger not to load the bags too full.. You’re the one who has to drag them in from the car, or worse, carry them home! Also, if you require help to take your bags out, ask for help. Locally, here, they will walk your out to your vehicle & help load, but you must be wearing a mask.

If you’re too tired when you get home to put away your groceries, just put away what *has* to be put away – usually meats and freezer & refrigerated item.. You can always leave the rest until you’ve feeling a bit better. Unless you have a great husband or kids, trust me, they’ll still be there!