Category: ME/CFS

flu still life

What To Know About Flu, Colds & Chronic Illness

Since so many of us with chronic illnesses stay at home most of the week, we aren’t exposed to the upper respiratory germs that people in the workplace run across daily*. Additionally, many chronic illnesses also include an immune system dysfunction.

It can be a shock to find out a family member, friend or caregiver has passed along a bug that hits you hard. Suddenly your nose starts to run, your throat is a bit scratchy and you may even feel overheated. Do you have the dreaded flu or a cold?

Many people think a fever occurs only with flu, but there is a huge overlap between non-flu viruses and those produce by classic influenza. That said, there are some predictable differences between the two contagious illnesses.

Symptom

Influenza

Common Cold

Other Viral

Onset

Quick, An Hour or Less

Several Days of Increasing Symptoms

Can Be Within Hours

Cough

Dry, Nonproductive

Wet, Produces Mucous

Fever

Yes

yes

Body Aches

Like You Were Run Over by a Truck

Slightly to Moderately Increased

Head Congestion

Some

Severe, Often Sinuses Inflamed

Sore Throat

Some

Often With Swollen Neck Glands

GI—Nausea, Diarrhea, Stomach Ache

No

No

Yes

Just about everyone in the medical community, as well as many bloggers, say it’s crucial everyone get a flu vaccination—preferably before the end of October. The flu shot’s effectiveness can vary from about 50% to 90% depending on how well vaccine manufacturers determined which strain of flu would be most active in the 2018-19 Flu Season.

Experts say that even if the vaccine is only 30-40% effective someone with it will have a quicker and easier time getting over the flu. Another reason frequently discussed is that vaccinations save lives. The rationale is that by vaccinating yourself, you’ll be much less likely to acquire and spread it to at-risk groups.

But say you are one of the millions of people with a compromised immune system. What to do? This was the subject of a recent, very long thread on the subject on a Facebook group I frequent for people with ME/CFS.

By the time the thread closed, there was no clear consensus. People spoke about how many months (usually three to four) they took to recover from flu and swore they would never go without a vaccination again. Others said they were down for three to four weeks with immune system activation after receiving a vaccination for flu.

Personally, I use the Mayo Health System. Inexplicably, Mayo still recommends the discredited results of an infamous research study–graded exercise therapy (GET) and cognitive behavioral therapy (CBT) as the primary treatments for chronic fatigue syndrome. Sadly, it does not list myalgic encephalomyelitis as a disease or condition.

I have a Masters in Nursing Science and worked as a Nurse Practitioner in South Carolina, Colorado, and Wisconsin before contracting this damn disease (ME/CFS). I do my own research and, since Mayo still clings to outdated and erroneous recommendations based on the highly flawed PACE Trial in the UK, I make up my own mind as far as my own health issues go.

So, as I have done many times in the past when faced with a decision, I wrote out the pros and cons.

FOR FLU VACCINATION (PRO)

AGAINST FLU VACCINATION (CON)

May help hubby, on O2 for COPD, avoid getting the flu

May trigger extended (2-4 wks) immune system reaction

Maybe bedridden for months if I get the flu

I have not had flu since contracting ME, actually not since I was a young woman

Chronically ill with a disease that began with a coxsackievirus infection

I am seldom ill from community-acquired infections, even when I was not homebound

I am chronically ill with a disease that began with a coxsackievirus infection, some specialists believe a subclinical enterovirus infection is at the root of ME

As Leslie Kernisan, MD MPH wrote in response to a question asking if flu vaccination making autoimmune diseases worse, “The CDC and other experts generally recommend that people with autoimmune diseases get the seasonal flu vaccine. This is because people with autoimmune conditions are at higher risk of having flu complications, and it’s estimated that the overall risk of being harmed by the flu is higher than the small risk of developing an autoimmune exacerbation related to the vaccine.

People with autoimmune conditions should not get the live attenuated flu vaccine. (But that one is not recommended in the US this year, anyway.)

I think there are certainly some doctors who believe it’s risky for people with autoimmune issues to get the flu shot. I was not able to find much scientific evidence regarding the risk, however, so I’m not sure we really know what the risk is.

I would recommend you discuss your questions regarding the likely benefits and risks of flu vaccination with your own doctors. You may want to discuss this question with a rheumatologist, as they may have a better understanding of the guidelines and research evidence on this topic.

Good luck!”

I respect Dr. Kernisan and so if she could find no contradictions for a person with a (presumed) autoimmune disease receiving an annual flu vaccination, I can’t argue with it.

I will be doing a 16-day Buddhist practice for my health starting this weekend. Not wanting a possible reaction to immune system triggering from the vaccine during this time of prayers and meditation, I will not get vaccinated until after the retreat finishes on November 5th.

I’ll let you all know if I have any sort of reaction to the vaccination. But what about you? Have you had a reaction to flu shots? Do you get an annual flu vaccination?

*I’m talking about folks who are deemed disabled by the Social Security Administration. If you are in the process of applying for disability or have just been denied benefits, there is an excellent post on how to appeal a disability denial as well as a host of other valuable information. Check it out on this website howtogeton.wordpress.com/.

Penguins

Serenity For Spoonies #26

This is the next installment of photos I find particularly intriguing and/or relaxing and hope you do, too. If you don’t know what a spoonie is, here’s a short article that explains it.

 

sunrise
Sunrise over a misty lake by Jasper Graetsch.
waterfall
The waterfall almost looks frozen. Photo by Jack Finnigan.

 

Penguins
Penguins! Photo taken by Ian Parker.
sunset

Serenity For Spoonies #25

This is the next installment of photos I find particularly intriguing and/or relaxing and hope you do, too. If you don’t know what a spoonie is, here’s a short article that explains it.

birch forest reflection
A birch forest reflected in a calm lake. Photo credit to Johannes Plenio.

 

seashore
This cold seashore has some intriguing elements. Photo by Joakim Honkasalo.
sunset
Another gorgeous sunset. Photo by Jesse Echevarria.
Tuscan farmhouse

Serenity For Spoonies #24

This is the next installment of photos I find particularly intriguing and/or relaxing. If you don’t know what a spoonie is, here’s a short article that explains it.

 

Tuscan farmhouse
Looks like a Tuscan farmhouse, doesn’t it? Photo credit to Karol Kaczorek.
woods and path
Just on a long walk through the woods… Photo credit to Joshua Fuller.
ocean sunrise
Imagine yourself with a warm beverage watching the sun rise over the ocean. Jonas Jacobsson took this photo.
round MEAction logo

People With ME Need Your Help To Stop The CDC Mistake

This is an email I received this morning. Please sign the petition. The information you need to make a decision is below.


Sign this #MEAction petition and stop the CDC from making ME treatment guidelines without our input!

View this email in your browser

Take urgent action to stop the CDC from repeating a terrible mistake.

 We need your help.

The US Centers for Disease Control (CDC) is updating its ME treatment guidelines. As part of this work, it is attempting to quietly hire the same independent contractor that previously recommended graded exercise therapy (GET) and cognitive behavioral therapy (CBT) for the treatment of ME. 

We cannot let history repeat itself: Sign the #MEAction petition to stop the CDC from repeating a terrible mistake.

Then SHARE on social media and with friends and loved ones. We must act quickly and respond by Friday, Aug. 31st. That’s this Friday!

We encourage allies around the world to fight this contract by signing the petition, no matter where you live.

SIGN the petition

Or read on to learn moreThe CDC is attempting to quietly hire the Pacific Northwest Evidence-based Practice Center (EPC) for a sole-source contract to help them develop new federal guidelines for ME/CFS treatment.

That may not sound that bad, but there is plenty of reason to be alarmed. This same contractor was hired four years ago to do a similar literature review of the evidence base for ME/CFS treatments by a CDC sister-agency, the Agency for Healthcare Research and Quality (AHRQ). It did not go well.

The EPC’s 2014 report included recommendations for graded exercise therapy (GET) and cognitive behavioral therapy (CBT), and concluded that PACE was a good trial with little bias!

Only through the dogged work of many ME advocates and an #MEAction petition did EPC finally issue a reanalysis TWO YEARS LATER

However, they still refused to publish this 2016 addendum in a peer-reviewed journal, making their conclusions effectively invisible to any future developers of treatment guidelines for METhis is not a contractor whose expertise or quality of work the CDC should trust.

We cannot let history repeat itself. We have to stop this right now. The CDC is trying to rush the EPC contract through with minimum time for us to respond.

We only have until August 31 – THIS Friday – to respond.

Sign the petition to demand that the CDC not issue this contract, put the project on hold, and meet with #MEAction immediately to discuss implementing a transparent and collaborative process for creating future guidelines that engages advocates and community representatives, and includes experienced ME researchers and expert practitioners.

We need you to take this urgent action today. EVERYONE can SIGN and SHARE this petition to the CDC, including those living outside the US.Sign the Petition Now!Let‘s make NOISE the CDC can’t ignore.

In Solidarity,
Ben HsuBorger
Community and Campaigns DirectorCopyright © 2018 #MEAction, All rights reserved.