Posts Tagged ‘Chronic Fatigue Syndrome (CFS/ME)’

Stress Impacts the Body

November 5, 2021

You all know stress impacts the human body. No one knows this more than people with Fibromyalgia. Part of our issue is that our muscles cannot relax because of the pain signals we are receiving at all times. Add stress to that, with most common physical reaction to stress is muscle tension. So adding tension to an already agitated muscle makes for a disaster.

No one knows yet 100% of the cause of Fibro. If it’s actually a physiological issue or if it’s a neurological reaction? Either way, the addition of the tension to the already agitated muscle, skyrockets the pain, with definite real pain.. Not just a neurological misfire that we could potentially be having.

And before anyone says I’m minimizing pain, I am not. People with fibromyalgia feel pain every single day. – it’s the cause we don’t know. We don’t know if the cause is something physical in the muscles, we don’t know if it’s part of the nerve chain or even something in the brain. We.just don’t know And as many of you know, I’m in a remission with my Fibro. I still feel pain, but I’m better managed and had made alot of changes a few years back. As a result, my pain levels rarely rate over a 5 – right now. I have, in the past, been bed bound. So I’ve been at both ends of the spectrum. I am the last person to downplay anyone’s pain let alone someone with Fibromyalgia.

But back to stress… I’ve been dealing with some pretty intense issues lately.. The big 2: 1. Problems with my Mom & our relationship.. 2. Issues with the guy I’m seeing – relationship may be ending. And I don’t think either one reads this blog. Those are the big ones but there is always in additional normal day to day stresses..

So….. On Monday night I had a breakdown. A complete emotional & mental breakdown (this does not include the meltdown I had earlier that day). I was in such hysterics that at times I could barely breathe.. You also don’t want to see what my kitchen looks like, cuz it all hit me as I was cooking stir-fry, which means three pots on the stove, each carefully times so everything finished hot at the same time. Interestingly enough I could feel myself deteriorating and the rice was pretty much done, the meat was pretty much done and the vegetables were almost done so I took the presence of mind to grab storage containers and just put everything in the fridge because there was no way I was going to be able to eat it and I have no family to feed. But I didn’t give myself enough leeway and ended up destroying the contents of the shelves with the storage containers.. Apparently I have a decent arm because I found, after the fact, empty storage containers or lids in my dining area, my office area, one almost in the living room and also my bedroom.

I ended up calling the local mental health line & spoke with a gentleman named Craig who listened & offered support..Initially, my mind had been racing with a lot of dark negative thoughts.. But I finally got calmed down enough after over an hour of venting. & I was no longer in that dark and twisted headspace.

I woke up Tuesday morning physically & emotionally wiped. Unfortunately this was one of the days that I just can’t say no. I had to drop my mom off at her doctor’s appointments because she no longer drives. I still also had to finish prepping my Cub Scout meeting.. Which meant I also had to run my Cub Scout meeting because this week got dropped in my lap on Sunday. The meeting went well and I was able to get out of my head for almost 2 hours not thinking about those big two issues. By the time I got home in the evening after my meeting, I stripped down, showered, got extra medicated and watched some mindless TV. That’s all my body would let me do – I pretty much hit the wall. Oh & eat some of the stir fry from the night before – lol.

And this excessive physical reaction is 100% due to stress exasperating the Fibromyalgia and some of my ppother chronic pain issues.

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?

Am I Better Yet?

May 27, 2021

Better than what?

Am I better than yesterday? Or Last Week? Last Month? Last year? Maybe, but that is not what you are asking, is it?

You are wondering if I still have Fibromyalgia or CFS/ME, or one of the many other invisible illnesses like Lupus, or Crohn’s disease. The short answer is No.

There is currently no cure for these debilitation yet chronic medical conditions. While there are treatments that *can* improve one’s quality of life, they do not work the same with everyone.

Now some people who are familiar with these conditions will ask that but mean something different. They are asking how one is, wondering if today is a good day compared to the bad day from last week.

Are you Better?? The connotations of the word better are eliminated by using a word like improved.

My answer to the later question uses the word “improved” not “better”. It clears things up because of the lack of clarity & assumptions made when using the word “better”.

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!!

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.

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

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