Archive for the ‘CFS’ Category

Fibro Friends, IRL

November 2, 2021

It’s interesting to note exactly how many friends I have, real, in-person, face-to-face local friends that I have with Fibromyalgia.

When I first started having symptoms in the mid-90s, I’d not heard of Fibromyalgia let alone know someone with this condition.

I only found out about fibromyalgia through, unfortunately, Dr Google. Few doctors had even heard of it then. Many did not believe it existed. Few had any idea how to treat it..

Jump ahead a few years..

  1. First person who was a friend of mine is Billy Jo. Her and I met in a mental health workshop in my local hospital. We met because of mental health & connected over of common physical health. We have been friend for.. 8-9 years now…
  2. My BFF was also diagnosed with fibro about 7 years ago. Due to an abusive relationship I was estranged from her while she went through her diagnosis. However, because she knew of my struggles and issues I’ve had getting diagnosed & treated, she had a good idea of what the process was & how to get it sped up.. my diagnosis took 13 years.. Hers only took 3-4 years.
  3. I had left the aforementioned relationship approximately 5½ years ago. This was just in time for my high school reunion.. One of the people I reconnected with another girl named Jo.. While we were not friends in high school we did know each other and we have to come friends in the here and now. I think part of the reason why we connected so well was because I understood and she did not have many other friends let alone ones who got & understood the issues with Fibromyalgia.
  4. Shortly after that reunion I connected with a lady in Newcastle who is my twin. No, we look nothing alike however there are so many other similarities. We were born within two weeks of each other, we both went to the same high school, we have almost the exact same list of medical conditions including Fibro, we react well to the same medications as well as an overlap in personal interests beyond our health. So we met about 2 years ago, shortly before covid and we’ve connected over these similarities, but also over our differences.
  5. Growing up, the neighborhood kids down at the end of the street were friends.. The oldest had a big gap between herself and her younger siblings so she hung out more with my older brother, his friends and some of my friends as she was a few years older than me but many years older than her siblings. After I moved back to Oshawa we eventually started connecting again a few years back. She also has Fibromyalgia.

Its interesting how many people have fibro that you may not even know about..

The Princess & the Pea

October 1, 2021

For those not familiar with the story. See Below. It was also made into a movie in ’02.

The princess slept on a pile of twenty mattresses and twenty feather beds and still did not sleep well due to the small pee in the middle of the bed under all those mattresses .

I am convinced that the princess in this story had some sort of chronic illness.. From the description, she could have any of the following: Ehlers-Danlos Syndrome, Fibromyalgia, CFS/ME, Rheumatoid or Osteo- Arthritis, Allodynia, Complex Regional Pain Syndrome, Sensory Processing Disorder (In conjunction with or due these other conditions.

The American National Library of Medicine says “Possibly the princess in Hans Christian Andersen’s ‘The Princess and the Pea’ suffered from FMS since chronic sleep disturbances are typical in FMS. These sleep disturbances have been attributed to a dysfunction in the systems regulating sleep and wakefulness resulting in loss of deep sleep. ” That can be said about the other conditions I mentioned as well..

If you do a search of “The Princess and the Pea, chronic illness”, you will get a long list of articles believing that the lass in the story wasn’t just ‘sensitive’, but had a chronic illness. While all of the conditions I mentioned above, it seems Fibromyalgia to be the most common conspiracy theory..

What do you think? Does she have a chronic illness? Which one?


The Story – The Princess and the Pea

A pile of 40 mattresses with a pra under the bottom one

Once upon a time, there was a prince who lived in a wealthy kingdom. When he had reached the proper age, his mother, the queen, decided the time was right for her son to find a bride.

The prince, however was determined not to marry just any girl, but that his future wife should be a “real” princess. So he traveled the world and searched in all the kingdoms and met with all the princesses, but he still wasn’t satisfied.

One evening there brewed a terrible storm, with thunder, lightning, and rain. It was really frightful! In the midst of it all came a knock at the town gate. The old king went to open it.Who should be standing outside but a young lass, and what a sight she was in all that rain and wind. Water streamed from her hair down her clothes into her shoes, and ran out in the heals.

She claimed to be a real Princess. Although no one believed her, she was invited in to stay for the night.

The queen decided to test the young girl’s claim of nobility – without saying a word, the queen went to the bedroom stripped back the bedclothes, and put a single pea in the bottom of the bed. The queen then took 20 mattresses and stacked them on top of the pea and took 20 eiderdown feather beds and piled them on the mattresses. Up on top of all these the princess was to spend the night.

The next morning when the girl woke up, the queen asked how she slept. “Oh very poorly!” she said. “I scarcely closed my eyes all night. Heaven only knows what was in the bed, but I was lying on something hard, and now I am black and blue all over my body. It’s horrible!”“

They saw at once that she must be a real princess when she had felt the pea through twenty mattresses and twenty feather beds. Nobody but a real princess could have such a delicate skin.So the prince took her to be his wife, for now he was sure that he had found a real princess

Could You Handle it? Constant Pain?

June 22, 2021

Yes, I live in pain every minute of every single day. It is the Nature of the Beast..

If someone tells you they have fibromyalgia or CFS/ME & are pain free, they are wrong. Pain free days do not happen. If someone is pain free they are either lying to you, lying to themselves or they were misdiagnosed.

Like all Fibromites, I have pain every single day. Some days is really great at 1-2/10, but it has been as bad as 8/10 for my kidney stones. Lately, I’m typically at 3 or 4.

The best I’ve been is a 1.. but a zero? No I have zero pain or painfree days.

I have Fibromyalgia. I live in sin every day. Yes, Every Single Day

So, do I wake up in pain? Yes.

Do I walk my dog in pain? Yes.

Do I do groceries in pain? Yes.

Do I write my blog posts in pain? Of course.

Do I exercise while in pain? Ha – tricky one. Yes, if I can do so without triggering a flare.Do I snuggle up & watch TV or movies in pain? Yes.

Do I socialize in pain? Yup, otherwise I’d be a hermit.

Do I participate in personal adult extra curricular activities while in pain? Unfortunately, yes. There is 2 posts about this topic in the works.

Do do my Scouting in Pain? Yes, I do. Only one person in each group has any clue about how I’m doing Raksha 13 & I have become good friends through Scouting & Rainbow I’ve known grade 8 or 9, but through guiding & scouting.

Don’t I take meds to help with the pain? Yes, but he important word there is *help*.

Now think about this.

Would you be able to handle never-ending pain? Knowing that it will never, ever end? That it could flare-up & knock you out with, if you’re lucky, only a moment’s notice??

Could you handle the negative prospects, knowing that most Fibromites do deteriorate? It means you will likely get worse, not better.

How could you handle additional fibro symptoms like debilitating fatigue matched with bouts of insomnia? What about a loss of cognitive function where you can’t remember silly stuff like the phrase “tug-of-war’ during a game of Pictionary with the kids. How about feeling useless cuz you are unable to help your kid with his math homework because you don’t remember how it works – all you can say is the answer is wrong, but unable to explain why, made worse cuz you had a partial scholarship in Mathematics.

What about the other “smaller” symptoms? IBS? Thyroid issues? Sjorgens Syndrome? Sleep impairment? TMJ? Reynauds Syndrome? Muscle spasms or reoccurring ‘Charlie Horses’? Costochondritis? Muscle weakness? Myofascial Pain Syndrome? Migraines? Allodynia (touch sensitivity)? Chemical sensitivities? Light, noise or smell sensitivities? Restless Legg Syndrome? Paraesthesia?

Admittedly, you won’t have all of these all the time, but they can spontaneously come & go without warning. But is that something you can handle, with the never ending pain & fatigue?

Very few friends can identify how much I’m in pain. My bff can usually spot it a mile off. My sister & occasionally my Mom can tell by looking at me.. I have other friends & family who have learned some of the more obvious signs of higher pain levels.

So yeah, I’m in pain, even as I’m snuggled up in bed, relaxing & medicated. I am still in pain. Always.

Could you handle it?

How I Got Approved for Disability

June 15, 2021

I first started having Endometriosis symptoms in my early teens. I started having CFSME symptoms in my mid-teen. My Fibromyalgia was triggered by a bout of of mononucleosis at age 19 which got slowly got worse…

Endometriosis was diagnosed when I was 26, Fibromyalgia at age 33, and CFSME at age 37. You’d think all these large diagnoses would qualify me easily for ODSP.

Nope.

My initial submission for ODSP, Ontario provincial disability benefits included documentation for endometriosis, fibromyalgia, edible syndrome, TMJ, asthma, IBS.. All of these diagnoses…No love..

From there I hired a lawyer you turned out to be a real dick and didn’t do squat. To keep my application current, I would request reconsideration based on regular bloodwork until I was able to get the needed documents.

When I requested a change of attorney I had to go into the tribunal, on the day of a huge snowstorm, with a broken foot.. The person who denied me didn’t even bother to show so the tribunal granted me the new legal representation – Durham Legal Clinic.

By this time, I’d seen Dr Alison Bested at the Environmental Health Clinic & had just become one of her patients in her private practice. I had another diagnosis of CFSME by her staff..

The legal clinic requested additional information from Dr Bested. They sent her a very specific document. This document basically outlined what I can and what I cannot do.

It covered the four broad areas of physical limitation. Mobility issues are those such as how far I can walk, do I need assistance devices for movement, how fast I can move – slow shuffle to jogging to an (ROTFL) out & out run. Upper body tasks include how much weight I can carry, how well I can push or pull heavy objects. Stair climbing functions are how many steps I can take, how fast I can climb. Activities of daily living include my abilities to eat, bathe, dress, sleep, administer my medications, preparing food & personal hygiene. She described me on my worst day.

My worst day, my pain is high. I can not walk more than to the bathroom – sometimes not even that far. This can cause issues with elimination. I am, at that point, unable to take any stairs, or carry anything heavier than a small plastic glass of water to take medication. I can not prepare my own food, let alone eat. Showering, brushing hair, cleaning my teeth would be beyond me at my worst..

Issues with Mobility, Stair climbing, , Upper-body tests & Activities of Daily Living like eating, showering and sleeping.

If you then you add my mental health health into the mix, especially as there were suicide attempts by this time, I was finally approved.

This same documentation, several months later, was used to successfully get approved by CPP-D, the disability program for Canadians.

It took several years for this process to complete.

May 12th, Awareness Day

May 12, 2021
International Awareness Day for Fibromyalgia, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Multiple Chemical Sensitivities

Today, May 12 is International Fibromyalgia Awareness Day.. also known a Fibro, FM & FMS, the rigging for today is Purple.

Today, May 12 is International Chronic Fatigue Syndrome / Myalgic Encephalomyelitis Awareness Day. Also known at CFS, CFS/ME, ME/CFS & ME, the ribbon for today is Blue.

Today, May 12 is Multiple Chemical Sensitivity Awareness Day. Also known as MCS, the ribbon for today is Green..

CFS/ME, Fibromyalgia & MCS Awareness Ribbons for May 12th

Welcome to May!

May 1, 2021

Welcome to Fibromyalgia Awareness Month!

Wear Purple for Fibromyalgia Awareness Month

What is Fibromyalgia? Fibromyalgia is a chronic pain condition characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. The current theory behind why is that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and non-painful signals.

Why is Awareness Important? Because there are many incorrect assumptions and false facts about this disease & the people who have it. People need to know that just because you can’t easily see my pain on my fatigue or digestive issues or cognitive issues or.. etc.. that does not mean it is not there.

Why May? Initially, Fibromyalgia Awareness Day started exclusively on May 12 – the birthday of Florence Nightingale. Why her? Not only is she the mother of modern nursing, it is believed that she has Fibromyalgia…After returning home from the Crimean War in 1856, her diary entries are suggestive of the classic pain and fatigue condition that we have all experienced. So May 12th became the date for Awareness for Fibromyalgia, ME/CFS, & MCS.. But why or how did they get that extended to the whole month? I have no clue tbh. .

Why should you care? Approximately 2 to 4% of the population has fibromyalgia. In the US, that’s about 6 to 12 million people, In the UK that’s about 1⅓ to 2⅔ million people. In Canada that’s about 750,000 to 1.5 million people. That is alot of people. So, if that is the stat for the entire world, that means there are 153 to almost 307 million people worldwide with fibro..That is A LOT of people.

So what? That’s still not me. So why should you care, even with those stats? Well, anyone can have Fibromyalgia. So your son, your daughter, your sister, your brother, your cousin, your friend, your mother, your partner. Anyone of these people could get fibromyalgia.. That also means if you know 100 people, 2-4 of them will have Fibromyalgia. So, you *do* know someone with Fibromyalgia.

How? Simple. Ask questions. Do some research to find out a little bit of fact (not fiction) on fibro. Be cognizant of your behaviour. Support those in your life with this condition – off help & let them know you believe them. Wear a purple ribbon to show your support Wear purple!!

COVID Vaccine Eligibility

April 19, 2021

So currently in Ontario, where I live, there is a three tier plan, which itself is made up of stages.

Phase 1 is for High-risk populations including

  • Congregate living for seniors
  • Health care workers
  • Adults in First Nations, Métis and Inuit populations
  • Adult chronic home care recipients
  • Adults ages 80 and older
  • Adults with the highest-risk health conditions:

From this group, my Brother-in-law, my 2 nieces & my Dad were all quickly eligible for the first phase.

Phase II is described as Mass deliveries of vaccines. This is our current phasewhere we currently stand in the process. This phase includes:

  • Adults aged 60 to 79, in 5-year increments
  • High-risk congregate settings (such as shelters, community living)
  • Individuals with high-risk chronic conditions and their caregivers
  • Those who cannot work from home
  • At-risk populations

So, with that description,you’d think I would be eligible in Phase 2 for either Endo, Fobro, CFS/ME, etc.. but no.. here are the lists of conditions that apply:

Highest-Risk Health Conditions, eligible at phase I:

  • Organ transplant recipients
  • Hematopoietic stem cell transplant recipients
  • Neurological diseases in which respiratory function may be compromised (e.g., motor neuron disease, myasthenia gravis, multiple sclerosis)
  • Haematological malignancy diagnosed <1 year
  • Kidney disease eGFR< 30

Of these conditions, I have none. .

High-Risk Health Conditions currently eligible

  • Obesity (BMI > 40)
  • Other treatments causing immunosuppression (e.g., chemotherapy, immunity- weakening medications)
  • Intellectual or developmental disabilities (e.g., Down Syndrome)

Of these conditions, I have none. It’s interesting that someone who is so far they are morbidly obese has priority over someone with a heart condition..

I no longer has a BMI over 40.. At my worst, my BMI was over 50 ( I just looked that up & I’m like “Damn, Girl!”) My BMI is now approximately 33.. so, I’m not eligible for that either.

At-Risk Health Conditions:

  • Immune deficiencies/autoimmune disorders
  • Stroke/cerebrovascular disease
  • Dementia
  • Diabetes
  • Liver disease
  • All other cancers
  • Respiratory diseases
  • Spleen problems (e.g., asplenia)
  • Heart disease
  • Hypertension with end organ damage
  • Diagnosis of mental disorder
  • Substance use disorders
  • Sickle Cell Disease
  • Thalassemia
  • Pregnancy
  • Immunocompromising health conditions
  • Other disabilities requiring direct support care in the community

Again no Fibro, No Endo, No CFS/ME.. Whil those last 2 are considered to possibly be autoimmune, they are not classified as such. So instead I qualify due to:

  • Respiratory diseases – I have asthma. It is currently controlled & I would only need th ventolin for strenuous activity
  • Diagnosis of mental disorder – I have chronic depression, have since I was 16
  • Substance use disorders – I have an addiction to fentanyl – controlled & my last use was about 3 years ago.

I’m not sure what the “other disabilities ‘ entails.. But I doubt it covers the other conditions, but it’s so vague.

So, cuz I am depressed, cuz I used to need a puffer & cuz I like fentanyl a little too much, I am eligible for phase not cuz of the Endo, Fibro, CFS/ME. Apparently people with these condition are otherwise only eligible in stage 3 with the rest of Canada. That is unless their family doctor gets vaccines.

Who Diagnosed Me?

April 8, 2021

My initial diagnosis was a few things.. I took maybe a dozen blood tests for the obvious including Lupus, Lyme and that’s sort of thing. I saw a rheumatologist who determined I had “symptoms consistent with fibromyalgia.” I immediately requested a referral from my GP to the Environmental Health Clinic at Women’s College Hospital in Toronto. It took just over 2 years to get my appointment but I got in. Luckily for me, my partner at the time was working at Sunnybrook/WCH,. He pulled a few strings and called in a few favours to ensure that I got the top physician.

I was able to see Dr Alison Bested. At the time she was *the* top physician for Fbromyalgia, Myalgic Encephalitis/Chronic Fatigue Syndrome and Multiple Chemical Snsitivities

Dr Alison Christine Bested. MD, FRCP(C). At a Millions Missing Event in October 2016

Dr Alison Christine Bested, MD, FRCP(C), is a Haematological Pathologist, one of only about 100 Haematological Pathologists in Canada. Her training covered areas including: Immunology, Blood Banking, Genetics, Anatomical Pathology, Internal Medicine and Haematology both clinical and laboratory. She is currently the Chair of Integrative Medicine at Nova Southeastern University. Prior to this position, she was the Medical Director of the Complex Chronic Disease Program at BC Women’s Hospital clinic, in Vancouver, British Columbia. Prior to this she was Medical Specialist Liaison, then Acting Medical Director at the Environmental Health Clinic at Women’s College Health Sciences Centre, in Toronto, Ontario,. Dr. Bested’s medical specialty practice had dealt with complex chronic medical conditions including: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM), Multiple Chemical Sensitivity (MCS) and persistent Lyme Disease.

Dr. Bested participated on the Expert Medical Consensus Panel that wrote the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. This consensus definition was published in the Journal of Chronic Fatigue Syndrome in 2003. In the literature this is known as the Canadian Consensus Definition of ME/CFS and is used worldwide by clinicians and researchers. She was one of the authors of the 2014 ME/CFS Primer for Clinicians published by the International Association of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. This summary publication is an updated version of the Canadian Consensus Definition of ME/CFS. Dr Bested has, with co-authors, written 2 books on these topics: : “Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia”, 2nd Edition, 2008 and “The Complete Fibromyalgia Health Diet Guild and Cookbook”, 2013.

What did she do? She sent me for more extensive testing, mainly blood work. Unfortunately due to cost I was unable to pay for some of the tests which she had ordered. So while she didn’t have 100% of the results she did confirm 100% that I do have fibromyalgia. Her staff also confirmed the CFS diagnosis aswell.

Some Disabilities Can’t be Seen

March 19, 2021

Not all disabilities are visible! In fact, the majority are invisible.. Here is a ist of many of the conditions that are not readily apparent & are ‘invisible’. This list is by no means exhaustive

  • Chronic Pain
  • Arthritis, both rheumatoid and osteo.
  • CFSME or MECFS
  • Fibromyalgia
  • Mental Health including but not limited to depression, anxiety, PTSD,, bi-polar, & schizophrenia…
  • Sleep disorders including sleep apnea RLS and TMJ
  • Diabetes
  • Epilepsy
  • Digestive issues such as Crohn’s, Celiac, Colitis, & IBS,
  • Endometriosis
  • HIV or AIDS
  • Chronic migraines
  • Lupus
  • Lyme disease
  • Multiple sclerosis or MS,
  • Severe Food & Chemical Allergies including Gluten.
  • Renal failure & heart failure
  • Brain injury including concussions, stroke & meningitis
  • Spinal Injuries
  • Fetal Alcohol Spectrum Disorder,
  • Narcolepsy,
  • Repetitive stress injuries like tendonitis & carpal tunnel syndrome
  • Learning disabilities like dyslexia, ADHD, ADD, Dyscalculia, Dysgraphia & Processing Deficits
  • , Ehlers-Danlos syndrome,
  • Myasthenia Gravis
  • Deafness, Blindness, Hearing loss, Speech impairments
  • Autism

Temporary Invisible Disabilities include:

  • Surgery
  • Severe Muscle Strain/Sprain
  • Pregnancy
  • Episodal mental health conditions
  • Severe infections

The COVID Vaccine & CFS/ME, A Professional Recommendation

February 25, 2021

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