Posts Tagged ‘Myalgic encephalomyelitis’

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

Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance

August 7, 2020

Tomorrow, August 8th, is Sophia Mirza’s birthday.

Sophia Mirza was accused of seeking attention, her family were accused of enabling her, and she was sent to a psychiatric facility where her health declined rapidly. Sophia died of severe ME in 2005 at the age of 32. The coroner’s report showed that Sophia had massive spinal cord inflammation at the time of her death, and that she died as a result of acute renal failure arising from the effects of ME.

Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance  was started in 2013 as a response to Sophia”s death.

Unfortunately, Sophia’s situation is not unique.

17-year-old Gigi from the UK was hospitalized with severe ME, and threatened with being sectioned  – forced institutionalization – against her will to a psychiatric ward for her inability to eat, speak or walk due to severe ME. Gigi’s family was told to stop “colluding” with their daughter.

24-year old Karina was forcibly removed from her home in Denmark in 2013 because of her myalgic encephalomyelitis (ME) illness for “treatment”. Because her mental and physical health deteriorated so quickly from ME-induced neurological damage, severe over-medication, trauma as a result of her circumstances, or some combination of all three.. she became unable to communicate verbally.. and was limited to s wheelchair because of her “treatment”. These “treatments included cognitive behavioural therapy (CBT), graded exercise therapy (GET), occupational therapy and psychotropic medications, all have been debunked and since considered detrimental by most ME specialists. She was lucky and was released in 2013 under significant international pressure, back home with her parents.


Myalgic Encephalomyelitis (ME) is a chronic, often severely disabling disease, that affects the autonomic nervous system, immune system, endocrine system, among others. It afflicts over one million people in the United States alone and as many as 17 million worldwide.  ME is a disease that robs individuals of their health, similar to untreated HIV. There are those that refer to ME as non-HIV AIDS – with good cause, as the disease can leave sufferers confined to a bed, with little capacity to fend for themselves.

With severe ME a person’s basic functionality is lost.. What would you do if you last the ability to complete any of the following basic tasks,: brush your hair or teeth, feeding yourself, going to ths bathroom unassisted, cleanliness – being able to bathe one’s self, being able to tolerate light, sound and/or touch, move unassisted in your personal space.

Many people, dare I say most, know someone who has developed ME. They done even know that because ¼ of ME, patients with Severe ME end up disappearing into darkened rooms and rarely seen. 

While I have ME & likely have since high school, my symptoms have always been relatively calm com pared to 25% who have been diagnosed with Severe Myalgic Encephalomyelitis.

August 8th is set aside for these people living their life with the most devastating of this deviating condition. It is these people we acknowledge today & honour their struggles as they live or in some cases exist with this disease. This day also for Awareness of the Severity of ME & the growing need to include the severe patients in current studies. Finally it is to remember those who we have lost both directly & indirectly due to Myalgic Encephalomyelitis.


**For clarification, this condition is also called Chronic Fatigue Syndrome.. it’s is often referred to as either CFS/ME or ME/CFS

She Saved Me!

July 17, 2020

In November of 2011, a little puppy was born. In February of 2012, she became mine.

Prior to us getting her, I’d had alot of issues. My relationship was severely toxic & abusive. I was no longer was in contact with close friends & family. My health was rapidly deteriorating & my disability made me almost house bound. My depression started going into overdrive & I did not deal well.

As a result, I have lost track of the number of suicide attempts I had over the first 5-6 years of our relationship. It was so bad that I wrote on my meds list “In the event of a Suicide Attempt Do NOT Let me go home”. I was on 5 different antidepressants & they were not mixing well either.

But my life Changed when in February 2012 when I was given a life to take care of. Lilly.

I now had a “reason to live.”

She became my world. She was 100% mine. My partner did close to nothing with her on his own. He didn’t feed her, groomer her, take her out. He did occasionally play with her, but I don’t think he ever loved her. But I did.

So despite the increasing toxicity, I was able to survive because I had her. I had to be around to take care of her. I honestly believe, she would have suffered if I was gone & left with him.

She was my world. She was the reason I got up in the morning – literally. I had to take her out for a walk in the morning to do her business.

My relationship came to a sudden end when his son overheard his Dad threatening Lilly’s life. Now I don’t know if the boy knew his Dad was talking about Lil, or if he thought the treat was towards me. Either way he called 911. My ex was arrested and charged with Uttering Death Threats I believe the charge was.

I took Lilly & moved back home to my parents despite their misgivings. I got counselling, months and months of counselling. I was able to focus on my health. I reconnected with old friends and made new ones. I managed to maintain friendships from the time I was with him despite him. I am so lucky to have both of my best friend’s back as two of the closest people to me. I’ve rebuilt my relationships with family, my parents, my sister & her family, my brother & his family.

I am happy, reasonably healthy, and alive. Thanks to her.

First TED talk on ME

January 20, 2017

#MEAction co-founder Jennifer Brea received a standing ovation for her moving TED Talk, the first ever about Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome

https://us2.campaign-archive.com/?u=908f2aeffeb0c0cea673894bf&id=5550d7fdb7

Skin Brushing Benefits Those with Chronic Fatigue

June 2, 2009


Skin Brushing Benefits Those with Chronic Fatigue

(NaturalNews) The skin is the largest organ in the body, and the most powerful route for eliminating toxins. That is why it is essential that people with Chronic fatigue, fibromyalgia, and other diseases associated with toxic overload regularly skin brush. More than 2lbs of waste are eliminated each day. Sunshine and air are also taken in through the skin. In fact, it can be said that our skin actually breathes. Skin Brushing has been shown to help the skin detoxify and renew itself.

Unfortunately, the skin of most people is unable to efficiently detoxify because it is clogged with dead skin cells and waste excreted through sweating that has not been removed. Dry skin brushing is a simple, inexpensive way of removing the waste from the skin and breaking down old toxic deposits. Skin brushing eliminates dead skin cells so that the new layer, which is regenerated daily, can come to the surface, making the skin soft and smooth. Skin brushing also gets the lymphatic system flowing so that it can perform its tasks effectively.

The lymph is the fluid that brings nutrients to our cells while removing waste. In fact, it is the primary vehicle for elimination. Unlike the blood, which has the heart to pump it, the lymphatic system is dependent upon outside forces such as exercise and massage for its circulation around the body. Most people are not able to get a massage every day, and far too few people in modern society get regular exercise. Dry skin brushing prompts the body to release its toxic deposits into the lymph, whilst simultaneously cleansing the lymph itself.

Because of its powerful ability to release the skin’s detoxification potential and to cleanse mucoid deposits from the cells directly into the colon, dry skin brushing is considered to be an essential part of any intestinal cleansing program.

The best time to skin brush is before a bath or shower. For optimal results, skin brush every day. Your skin may feel tender at first, but if you continue to brush your skin on a regular basis, you will soon feel the benefits, and your skin will come to crave the daily brush!

The entire surface of the skin should be brushed, with the exception of any broken or cracked skin and the face, which is generally too sensitive to be brushed. It is imperative that the brushing be carried out when your body is dry. The brush should also be kept dry so that the bristles don’t become soft and lose their effect.

In order to maximize the lymphatic benefits of dry skin brushing, the skin should be brushed according to the locations of the two lymph plexuses. The majority of the lymph in the body drains into the thoracic duct, located near the heart. However the lymph from the upper-right quadrant of the body (the right side of the face, neck and chest, including the right arm, and following the line of the ribs down) drains into the right lymphatic ducts, located above the liver, under the right breast.

The skin should therefore be brushed in long, firm strokes up the legs and in towards the heart, except for the upper-right quadrant, which should be brushed downwards towards the liver (under the right ribcage) and the right breast.

More information at

  • http://healingtools.tripod.com/skinbrush.html
  • http://www.naturalhealthtechniques.com/healingtechniques/Dry_Brushing_Technique.htm
  • Source: www.naturalnews.com

    Endorsed by: Chronic Sunchine

    Quote, AIDS vs CFS/ME

    June 1, 2009

    “I have treated more than 2,000 AIDS and CF(/ME)S patients in my career. And the CFS()ME) patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!”
    – Dr. Marc Loveless
    (infectious disease specialist and head of the CFS(/ME) and AIDS Clinic at Oregon Health Sciences University, in Congressional Testimony, CFS(/ME, FMS & MCS) Awareness Day, May 12, 1995)

    Welcome !

    May 29, 2009

    Welcome to my Blog!

    My name is Kelli.. But I am also known online as Neon Rose and it’s variations (I answer to the name Neon, IRL).. I am also known, in scouting circles as Koolaid – yes, as in the drink (long story, I’ll tell ya some time)

    This blog is about my life, my medical issues and any information I can share thereof.. I have been diagnosed with Fibromyalgia, Endometriosis, Allergies, Sensitivities, Asthma, Irritable Bowel Syndrome (IBS), Depression, Chronic Fatigue Syndrome (CFS/ME), Hypo active Thyroid, Restless Legg Syndrome (RLS),  Osteoarthritis (OA) and a host of other issues that are part and partial to go with the above mentioned. The focus here is going to be mainly on Fibromyalgia (hence the title), but will also include fibro-related issues and Endometriosis.

    Why, you ask, primarily on Fibromyalgia. Well, cuz Fibro is the most significant issue at the moment.. My endo is under control, as is my asthma, RLS, allergies, etc.. Also, Fibromyalgia is also the least understood, most misdiagnosed and under treated condition that I have. If I can just help one other person, then, I’ll feel awesome cuz I have helped someone. (Why do I suddenly have a girl guide song in my head? *shrug*).

    What aspects am I gonna cover? Everything I can. If you look at my categories you will see I plan to cover many areas of traditional and non-traditional medicines including Eastern medical philosophies, faith, as well as non-medical areas of life. I also plan to cover support (financial & emotional) and daily living and coping.

    If you have questions, please feel free to ask.I will do my best to answer.

    Note that all my content does not necessarily belong to me, however sources are always listed and author if available, if it is not original content. Please see disclaimer post for copyright information.