Author Archives: Lydia Neilson

Unraveling and Streamlining ME/CFS and FM in the Canadian Health Care system

National ME/FM Action Network

November 4, 2017

To Whom It Will Concern

Unravelling the mystery of the Canadian healthcare system and making the ME/CFS and FM community an active participant in streamlining the vast medical information accurate and up-to-date in the health-care system.

As we all know, each province and territory has its own healthcare system and rules and regulations and how up-to-date it is about any illness is dependent upon the knowledge of those who work with it.

Since the Canadian Government lets each province and territory control its own healthcare, unless we get involved ourselves, nothing will change rapidly to help the ME/FM community.

The Ontario Minister of Health set up a taskforce to study and recommend what needs to be done to aid our community. The first phase of this report by the Task Force is now done and the report released.

Since Ontario is the only province so far to set up such a task force and even if the other provinces and territories follow suit, they would be repeating what has already been done in Ontario and precious time wasted.

Therefore, what if we take this Task Force Report, improve what needs improving and eliminate inaccuracies, we then present our report to all ministers of health in all provinces and territories. Healthcare may be different in each area but the basic fundamentals of ME/CFS and FM should be the same everywhere. The confusion has got to stop.

I have taken the main recommendations of the Task Force Report, and put links for further study at in my report but took away the minute details so that we have a better chance of working with the recommendations.

Setting Up An Investigative Working Group

To assist in this task, if you are able to, it would be great if we get volunteers to go over the recommendations of the Ontario Task Force and made suggestions and recommendations to improve a report we plan to send to all the Health Ministers across Canada. The reasoning behind this is that once the report has been distributed, it can be followed up so that it does not end up in limbo at their offices. Right now the contact information is being put together by a volunteer so that all that information will be available at a glance.

If you have the time and the energy, please consider helping with this endeavor. Our experience has shown, the only way to change inaction to action, is for us to be in the driver’s seat.

Sincerely,
NATIONAL ME/FM ACTION NETWORKK

Lydia E. Neilson, MSM
CEO, Founder.

Recommendations of the Ontario Task Force to the Ontario Minister of Health.

ONTARIO

Time for Leadership: Recognizing and Improving Care for those with ME/CFS, FM and ES/MCS 

Task Force on Environmental Health – Phase 1 Report

When the task force was created, the terms environmental health and environmentally linked conditions were chosen as convenient “umbrella” terms for all three conditions. However, the task force acknowledges that: 

 
July 2017 (Last modified: July 7, 2017-10-19

Summary of Task Force’s letter to Ontario Health Minister, Dr. Eric Hoskins

Address of Health Minister
Community Office of Dr. Eric Hoskins, MPP St. Paul’s
803 St. Clair Ave West
Toronto
M6C 1B9
Email: ehoskins.mpp.co@liberal.ola.org
Phone: 416-656-0943
Fax: 416-656-0875
In its Phase 1 report, of a three-year mandate, the Task Force identified the critical steps the health minister and health care could take now to enhance the health of people with ME/CFS, FM, and ES/M CS.

a lack of recognition of the seriousness and severity of these conditions 
• a profound shortage of knowledgeable care providers 
• a dearth of clinical tools to support and guide care 
• a discouraging shortage of services and supports for people living with these conditions 
• an absence of support for family caregivers 

The lack of knowledge and appropriate accessible care has devastating effects on Ontarians struggling with ME/CFS, FM and ES/MCS. It can take years of clinical referrals and fruitless (and often unnecessary and costly) testing for them to finally get a full assessment and correct diagnosis. Once they have a diagnosis, there are very few effective treatment options and social supports to help them live well with their conditions. 

For those living with ME/CFS, FM and ES/MCS, the lack of recognition of these serious and debilitating conditions is as harmful as the lack of treatments. It means that the conditions are not identified early so any care that is available is delayed. Requests for disability benefits and for accommodation at work, in housing and in health care are refused. Individuals and their families become socially isolated. 

We urge the Minister to act now to raise awareness of these conditions and address the barriers that keep people with ME/CFS, FM and ES/MCS from getting the care and services they need. 

Siged Dr. Howard Hu 

(For brevity, will refer to the Task Force on Environmental Health as TF)

Executive Summary

Recommendations:

#1.1 Make a formal public statement recognizing ME/CFS, FM and ES/MCS;

#1.2 Fund academic chair positions in clinical environmental health focused specifically on ME/CFS, FM and ES/MCS;

#1.3 Modernize the Ontario Health Insurance Program (OHIP) fee code K037 – in collaboration with physician and patient experts – to ensure it recognizes all three conditions. 

#2.1 Establish an expert panel to reach consensus on clinical case definitions and clinical practice guidelines for each of the three conditions. 

#3.1 Provide funds to support the development of clinical care pathways for people with ME/CFS, FM and ES/MCS and map out an appropriate patient-centred system of care for Ontario. 

#3.2 Work with its partners, such as the Ontario Hospital Association, and with expert patients, caregivers and physicians to ensure hospitals comply, as quickly as possible, with relevant accessibility and accommodation legislation. 

#3.3 work with its partners, such as long-term care provider organizations, and with expert patients, caregivers and physicians to ensure long-term care homes comply, as quickly as possible, with relevant accessibility and accommodation legislation. 

#4.1 continue to fund this program until the task force makes further recommendations for advanced education specializing in ME/CFS, FM and ES/MCS. 

http://www.health.gov.on.ca/en/ms/ecfa/healthy_change/

Approach being used by TF:

Evidence-based that integrates evidence, lived experience and clinical experiences gathered from:

– expert members of the task force – scientists, clinicians, people with lived experience and caregivers;

– outside clinical experts who made presentations to the task force;

– the Ontario Human Rights Commission;

– data and research gathered and analyzed by the task force secretariat. 

Please see link: 4 Jacobs JA, Jones E, Gabella BA, Spring B, Brownson RC. Tools for Implementing an Evidence-Based Approach in Public Health Practice. Prev Chronic Dis 2012;9:110324. https://www.cdc.gov/pcd/issues/2012/11_0324.htm  

The Case for Action

TF states the life-altering condition and drastic impact it has on people’s health and quality of life pointing out that some people are so severe they are housebound and even bedbound. Compared with Ontarions with other conditions and how they are more deeply affected by quoting the Community Health Survey statistics.

Lack of Knowledge 

ME/CFS, FM and ES/MCS are relatively “new” medical conditions. Although there are reports of the symptoms dating back more than 100 years, it was only in the 1980s that these conditions started to be widely recognized and defined. Over the past 30 years, the body of evidence for each one has been growing. Each of the three conditions – ME/CFS, FM and/or ES/MCS – is distinct and scientifically recognized. Their characteristics and symptoms are known 

For details, please see:

The challenges of living with these conditions have been well documented in the business case for an Ontario Centre of Excellence in Environmental Health. http://recognitioninclusionandequity.org/about-the-conditions/community-consultation-and-patient-survey/  

TF states that based on twin and family studies, both genetic and environmental factors may play a role in ME/CFS and that a growing body of evidence suggests problems with inflammation, the immune system, the microbiome, neurotransmitters, the metabolic system and the mitochondria may be the mechanisms involved in ME/CFS.

TF also points out that with FM scientists agree that the central nervous system is likely involved. FM is often but not always triggered by physical injury or infection, and genetics may contribute to half the risk of developing the condition.

In regards to ES/MCS, few rigorous investigations have been done. However, studies done outside North America indicates that fundamental neurobiologic, metabolic and genetic susceptibility factors may play a role. 

To see more details on current state of recognition, please see:

Hu H. 2017. Current State of Recognition and Understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM) and Environmental Sensitivities/Multiple Chemical Sensitivity (ES/MCS): A White Paper for the Ontario Task Force on Environmental Health.  

Lack of Research

Lack of Research 

Shortage of Skilled Providers

Lack of Timely Appropriate Care 

Lack of Treatments

Lack of Support for Family Caregivers 

Lack of Recognition 

Recommentations

TF goes in more detail regarding the recommendations mentioned earlier in this report.

TF Provides the following links:

Evidence Synthesis Unit. (2016). Rapid Response on Definitions of Selected Environmentally Linked Diseases. Ontario Ministry of Health and Long-Term Care. 10 Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); 2015 Feb 10. Current Case Definitions and Diagnostic Criteria, Terminology, and Symptom Constructs and Clusters. Available from: https://www.ncbi.nlm.nih.gov/books/NBK284898/ 11 Evidence Synthesis Unit. (2016). Rapid Response on Definitions of Selected Environmentally Linked Diseases. Ontario Ministry of Health and Long-Term Care.  

Summary of Literature Review Findings: Case Definitions 

Clinical Practice Guidelines Used

Source: IOM (Institute of Medicine). 2015. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Washington, DC: The National Academies Press. 13 National Institute for Health and Clinical Excellence (NICE) 14 Institute of Medicine. 2011. Clinical Practice Guidelines We Can Trust. The National Academies Press.  

Methodology for Assessing Clinical Practice Guidelines

TF references in international tool for evaluating the methodological regour used for guideline development:

Please see link:

http://www.nccmt.ca/resources/search/100

More statistical data

Dr. Howard Hu etal June, 2017 White Paper for the Ontario Task Force on Environmental Health

There is no such thing as “waiting for the week-end” when you have a chronic illness

In talking with a friend who was planning some week-end activities, it suddenly occurred to me that I never planned something for the week-ends anymore. Nor for that matter did I plan anything, except for doctors’ appointments.

The more I thought about it, the more I realized that I plan my day only when it has arrived so I know what I have to work with that day. My days are either good days, that means I have a bit of time to do something before I must lie down, or bad days where I try to conserve what energy I can to just cope with the day. On that day you do not plan anything, but try to cope as best you can.

It is not only that you cannot plan because of the unpredictable nature of ME/CFS but it is stressful. If for some unforeseen reason you must commit to a certain date, which is especially true for celebrations, that becomes a double whammy of stress. Now you have to think about not only that day but how long it will be. Is there a place to rest or is the company such that it would be awkward to ask to lie down.

We are all aware of this of course but we do not normally dwell on why. We just adapt to our new way of life. I hadn’t realized that I do not plan to do something special on the week-end. I used to do that when I worked and was home for the week-end. At that time I could be relatively sure that I would be ready and able to do whatever it is I wanted to do. How I took that for granted. How lucky people are who still fall in that category and think nothing of making schedules for their week-ends, holidays and vacations. They do not even take their health into consideration at all!

Vacations cause an entirely different stress level. If you have a family and you don’t go along on the vacation, it might mean that you mess it up for the whole family. If they go without you, they will feel guilty. If you go with your family they will be pleased but now you are stressed. You try to participate so as not to spoil their fun and do more than your energy and health allows. You have the worry of wondering whether you are able to last the event. Even if you do, your chances of not having a crash afterwards are slim.

I thought I would write about it as I know I am not the only one who feels like that. I am finally at the stage myself where it does not stress me out as much for most events with my family. However, if it is an event that involves other people I am not so familiar with, by the time the day comes, I have imagined a million scenarios about what could go wrong. As I do not tell others outside our immediate circle of having ME/CFS, it means I have to find excuses to cover any short-comings I might face on that day. For instance, this week I had to do a TV interview which I had known about for about a week. It was set for 10:30 am. That meant that was all I did that day. Before the interview, to preserve my strength and after the interview to recoup. I managed not to crash for that one.

I am one of those people who, when a thought occurs in my head, it will go around and around until I write it down and see it in black and white.It helps to get rid of items that I merely have to acknowledge. Writing it down takes the place of having to tell somebody. That is why I also wrote my story, Between You and M.E. That one was a tough one as to relate it, it was necessary to go back in the past and relive it. It took time and the courage to deal with the history but it was a relief once I had written it down.

By looking over what I have written, I realized how much strength and determination we have developed to make up for what we have in short supply, our health.

Lydia
8/8/17

Adrienne’s Story

My experience of CFS began with a brief illness in July 1987. I was 30 years old at the time, with a month old baby, and a two year old. It felt like a flu, with a fever lasting through most of the night. The next day, I was better although with a distinct feeling that something had changed. Over the following week or two I experienced my first rounds of muscle pains in my shoulders and hips, swollen glands, fatigue and depression. I went to the doctor, and was screened for Epstein Barr virus and mononucleosis. There was no conclusive diagnosis, and I was left to come to my own conclusions. As my symptoms continued through the rest of that summer and into the autumn, I began to look into the matter on my own. At the time there were a number of recently published books that suggested I was suffering from Candida, or overgrowth of yeast in my digestive track. At one point my family doctor sent me to Vancouver General Hospital for an evaluation of my myalgias, etc. They appeared to be gathering clinical data, but I didn’t hear from them afterwards.

In 1989 I experienced iritis, which was treated with steroid drops by the ophthalmologist. Meanwhile, my pattern of flare ups settled into a pattern until I became pregnant with twins in the spring, and experienced a sustained break from the pain and fatigue. The babies went to term and were born in December 1990, and my CFS symptoms did not return to their usual pattern for some months. When I asked doctors about it, and about the theories of what I might be experiencing they were skeptical, and suggested it may be psychological.

While I was struggling with a bout of depression in 1995, the psychiatrist prescribed a combination of Effexor and Valium, which I was taking when my father died suddenly of a heart attack. A year of grief followed which was bearable for being understandable, and somehow easier to face than the depression that had preceded it. Over these years, my CFS flare ups were frequent and made life difficult to manage. Although I could always get through the day by pushing through with swollen glands, stiff hips, fatigue, anxiety and a feeling of desperation, it was often very difficult. I went to a naturopathic doctor, and was given intravenous vitamins, and a very long list of foods to avoid. The vitamins and dietary changes didn’t appear to make any difference. I also took a course in Transcendental Meditation, and began to meditate on a regular basis.

Over this time, I found relief came with hot baths, stretching, meditation and drinking alcohol. The baths and alcohol offered the most predictable respite, and I remember the naturopath being taken aback when I told him about the drinking. Although I’m reluctant to speculate about the reasons, I’ve wondered whether its immunosuppressant effects of may have come into play.

Since the last 1990’s, my flare ups have gradually decreased, and now only occur every few months. These periods generally last for a week or two; often just after I’ve recovered from a cold or flu. One thing that’s striking about the symptoms is that they are always much more disturbing than those associated with a “real” illness: an actual head cold is comparatively luxurious because it doesn’t come with the deeply wrought discomfort of the muscle pain and desperation. I also find that oral analgesics (acetaminophen, ASA, ibuprofen) do not bring relief.

In late 2011 I was experiencing a difference sort of pain in my upper back and legs, which turned out to be accompanied by a high ESR, and I was diagnosed with Polymyalgia Rheumatica. My rheumatologist oversaw a gradual tapered dose of Prednisone over the next three and a half years, ending with a course of Methotrexate for the final six months after discontinuing the steroid.

When the planned opening of the Complex Disease Clinic at BC Women’s Hospital & Health Centre in Vancouver was announced, I asked my doctor to support my application, and she ordered the requested blood tests in April of 2013, and submitted the results in along with my application. Some months later, I telephoned to ask about the status of my file. Due to organizational issues, it hadn’t reached the point where I would be contacted to complete the intake process. As of December 2016, I still haven’t heard from them. My doctor is angry because she was criticized for the number of tests, and their cost, and so would be unwilling to do so again in the future.

I am hoping my case will eventually be reviewed by this clinic so I can share my experiences with both CFS and PMR. My family doctor and rheumatologist remain unconvinced about the existence of the CFS/ME and/or FM. While I am fortunate to be free from symptoms most of the time, flare ups remind my how profoundly this mysterious ailment can affect both mind and body.

Sincerely,

Adrienne
Canada

How Difficult It Is To Keep Fighting

Michel’s Story

My doctor was completely convinced that I had ME/CFS and diagnosed me with that. Back in 2007 He was extremely patient and angry with the insurance company and spent a great deal of time and effort repeatinglly sending them his professional diagnosis. He reassured me he wouldn’t let me down. I loved to hear it.

The insurance company wanted a positive “test” however and there isn’t one and at that time easily got out of paying me.. The union lawyers were unable to produce any “test” results; They had to drop the case after 2 or 3 years of haggling.

The sad part is losing a career I relished. I was a science technician with the a District School Board for almost 12 years and set up experiments for high school students from grade 9 to grade 12. I almost always needed to participate amd worked with and along -side students and teachers; getting to watch them mature and succeed in that special environment. . It was fascinating and never a dull moment.

As an honours college graduate, I had the credentials to teach a general interest course in the evenings; showing adults how to create and maintain gardens for themselves.
I lost several of my reliable clients whose gardens I created and cared for. Work I loved to do and planned to use as a hobby and resource when I retired.

I learned to love the outdoors and took every opportunity to enjoy hiking the surrounding trails and hills.

It took my doctor 2 years of effort before I was accepted for CPP disability. If I had the strength, the resources, the help I would need on how to proceed; and of course, the marker that proves I have ME/CFS, I could sue, and possibly win my case, and do something more interesting than complaining too often. I read about two cases where the Judge’s decision went for the victims of the ME/CFS curse. If you read this short article, you get an idea of how difficult it can be for these people to keep fighting.

Michel

http://www.thecanadianencyclopedia.ca/en/article/chronic-fatigue-syndrome-recognized/#h3_jump_0

Woman with Chronic Fatigue Syndrome Sues Manulife for Disability Benefits


Woman with Chronic Fatigue Syndrome Sues Manulife for Disability Benefits

Personal Injury Lawyers / Disability Lawyers

Colleen’s Story

AN ODE TO YOU AND M.E.
By: *Colleen Downey
*Copyright 1996

Once upon an eerie morn,
I woke up with the claws of scorn;
One placed atop my aching head;
the other holding me in bed.

And months ahead to my surprise,
did fill with tears my swollen eyes.
Then I did learn what does prevail;
the illness that has made me pale.

For now my ears, they buzz as bees
that swarm amid the plants and trees.
And muscles grasp and clasp and twitch;
the skin upon my arms does itch!

Once I could RUN down any hall…
Yet… now I hold onto the wall.
At times… I am afraid to fall…
At times… I simply have to c-r-a-w-l…

And in my yard, no apple grows..
But yet, the scent does brush my nose.
And where my glasses I do place,
when I return, there is NO trace.

There is a reason I presume
why I have walked into this room;
And so go back and hope to find
the reason that I left behind.

For friends who have a winded pipe
of many words… the draining type,
I must now set a timer bell
to shorten tales they wish to tell.

As I explain in my defense,
“My friends, you must not take offense;
I yawn not at your strifes and whoas;
the illness makes me nod and doze.”

And what maintains a love affair?
There must be something in the air;
Or is it just my swings of mood,
that tango with your solitude.

Perhaps the scent of menthol rub
or sweetened words I often flub;
When on occasion n my head
the script is there but then instead,
the words do fumble and abort,
when “salt” is “sex” and “wall” is “wart”…
When “win” is “whine” and “nod” is “nude”
And speed is slow and mad’s the mood!!

The universe will soon reveal
the secret that it does conceal;
the reason for this pain and strife,
a new found purpose in my life?

Though now my thoughts are out of sorts
I still expel some fine retorts!
Just kindly tell me if you please…
WHERE HAVE I PUT MY BLOOMIN KEYS???
Footnote:
Published in 1997 in the former M.E. Canada newsletter and B.C. Fibromyalgia the same year

About Colleen:
Colleen was in two car accidents, one in 1994 followed by another in 1995. She came down with a flu and was diagnosed with ME/CFS, FM and MCS in 1996 after a year of symptoms. She spent three years in a wheelchair then slowly recovered to 50%, had a baby and went on to be a mom and work partime again for 7 years. In the last year she had a relapse and is “…..working on pulling out of it. I am aiming for a full recovery, slowly, one day at a time.”

How I learned to research through the 4 letter word

How I learned to research through the 4 letter word.

When my family and I moved to Canada from the Netherlands, none of us knew any English. Naturally, we did whatever we could to learn. My dad did his best to help us all so when he would come home from work, he would bring us a new word to learn.
Then there was the fateful day, although I didn’t know it at the time, that I learned to never take for granted what you are told is accurate. This day my dad came home and told us that the word he was about to tell us was very important. He said that each time someone would say something, they emphasized it by putting in this word. He said, each time you want to say something important, you put this 4 letter word in it and it will show the importance of what you are saying. We were suitably impressed.
I had just started my first job working in the Claims Department of an Insurance Company. My English was good enough for the job I had applied for but was at the stage where I wanted to impress my Scottish boss. I even remember his name – It was Ernest Hagan. Other names have come and gone but this incident left such a lasting impression that I have never forgotten it.
I remember going to work and my boss always was in first and want say good morning to me and telling me it was a nice day. I told him it was a (4 letter word) good day. I thought he looked at me strangely but he didn’t say anything else. To practice a new word, I would use it the whole day so that it would become part of my vocabulary and I could say it with ease.
For that whole day, I use that 4 letter word at every opportunity I had that by the end of the day, my boss called me into his office. He said, Ms van Mourik, please do not swear in the office. No one has the nerve to tell you this but the word you are using is offensive. I was surprised and said, doesn’t it mean very? He told me that he did not want to embarrass me but to talk with someone who could explain it to me.
When I finally found out what the word meant, I never again would take for granted that what I was told was accurate until I would check it out. This has never failed me and to this day, no matter what new information I receive, I will make sure that it is accurate before I would use it.
I never thought the 4 letter word was able to teach me anything but it did.
Lydia
May 13, 2016

Oh good, it is just a warning of a migraine coming

It never fails. A few days before I get the migraine, I start becoming moody and all these negative thoughts come into my mind. Things all of a sudden become too bright and I become very sensitive to smells. That comes close to also getting nauseated which is a sign I am aware of but as it follows after the other sensations, I never connected the two.

When you have ME/CFS, you are alert to symptoms I think more than the healthy individual but I never connected the emotional disturbances. It is always a relief when the migraine comes on which explains the other symptoms. The negative of all this is that it is great to get a warning but as I get the auras etc., a warning doesn’t do me any good as I cant do anything about it except wait for it to pass.

Not knowing what I was dealing with and as I have heart problems, the first thing I must always do is check my blood pressure. Interestingly I discovered that my BP goes up when I get a migraine. I wonder how many other people are aware of this.

I started keeping tabs on things I do in an effort to avoid triggers and so far I have discovered that cola of any kind brings on a migraine for me as does msg. I’ll keep this up for a couple of weeks to see if I can see a pattern forming.

My youngest son has had migraines since the age of 7 and as he got into his 20’s, he has been getting them every day with the auras as well as excruciating pain. His pain gets so bad that his blood pressure becomes dangerously high and needed to be put on medication to control it.

My mother had migraines all her life but did not have the auras with it. She had gotten into the habit of taking aspirins in the morning every day to control the pain.

My oldest son knew nothing about migraines and although sympathetic, did not understand them. Then apparently a few weeks ago he had a migraine attack and was out of commission for days. He said he was unable to function and had no idea how incapacitating a migraine can be.

I had some warnings today of an up-coming migraine but this time I am prepared and knowing that the emotional issues will go away the moment the actual migraine starts. I don’t look forward to the migraine but I am relieved that that is what it is and not another issue to deal one. It is the same one but now with enlightenment.

Lydia

Hannah’s Story

HANNAH’S STORY

10:07PM GMT 24 Mar 2016

If you had told me 10 years ago that one day I would be studying maths at the University of Bristol I probably would have laughed, or cried. Maybe both. But I definitely wouldn’t have believed you.

Around this time, back in 2005, I was struck with a nasty virus and never fully recovered. As an 11-year-old I saw more of hospitals than I did of school. After a year of being completely bed bound I was eventually diagnosed with Myalgic Encephalomyelitis (ME), commonly referred to as Chronic Fatigue Syndrome.

• The Symptoms

ME comes with an array of symptoms; a relentless throbbing forehead ,crippling on a bad day and still present on a good day, an ache in every muscle and joint that is amplified by any exertion, a mind fog that makes concentration a constant battle, and the memory equivalent to that of a goldfish. Most of all, overwhelming fatigue – completely unresolved by sleep.
I went from being outgoing, sporty and social to not being able to sit up for more than minutes at a time.
On the days I was at my best, the excitement would be getting to go downstairs for an hour or two, although getting me back up them would have been a struggle without my brother. Sensitivity to light and sound made the smallest everyday occurrences almost unbearable, being in the same room as someone who ate or breathed too loudly was intolerable. Still is (sorry).
On the days where the illness slightly eased its grip on me, my days would be consumed with One Tree Hill box sets, yet even then someone had to change the disc for me.
ME comes with an array of symptoms

Common misconceptions with this illness stem from the word ‘fatigue’, which is used interchangeably with tiredness and exhaustion. This leads many people to believe that the illness just refers to being a bit tired like everyone else after a long day or the state of being sleepy; whereas its real definition describes the body being utterly exhausted and the accompanying symptom of insomnia makes sleep hard to come by.

I compare my diagnosis to that of my dodgy iPhone battery; it drains way too quickly, and no matter how much I charge it, it will never reach 100 per cent.
When the time came to discuss a plan for GCSEs I was only managing a few days of school a week, and was advised by my nurse to take none and try to recover by resting permanently.
The assumption often is that a child would jump at the chance to give up school, but in reality that’s very rarely the case and definitely wasn’t a choice I was able to face.
“I compare my diagnosis to that of my dodgy iPhone battery; it drains way too quickly, and no matter how much I charge it, it will never reach 100 per cent.”
Eventually I came to accept that I didn’t really remember what it was like to not wake up feeling unwell, so maybe it was time to redefine my ‘normal’. I compromised with a 40 per cent timetable, which enabled me to take six GCSEs and later three A-levels. Despite this, I never really thought university would be on the cards for me.
However with the overwhelming support of my wonderful family, friends and teachers, I was offered a place to study maths at the University of Bristol.
Many people who know me at university may be quite surprised to read this article. It is not something I often share with people. However, with the new research, conducted by the University of Bristol, showing one in 50 16-year-olds have been diagnosed ME, it is clear that the struggles of continuing education with a chronic illness are common.
Through the ME Association I have spoken to many fellow sufferers about their choices regarding higher education. Many chose to continue their studies, although not all stand by this decision. Numerous sufferers opt to continue education with the Open University, which allows for much greater flexibility and management.
These are some of the approaches I have adopted to make life at university with ME easier.
Be proactive

The comfort blanket that I had relied upon and left behind on moving to Bristol was probably a lot bigger than your typical student’s. My teachers and friends who knew all the ins and outs of my situation, and provided support without having to be asked, were no longer present. It took a long while for me to accept that asking for help wasn’t a sign of weakness.
I would advise any student with ME to request accommodation close to where you’ll be studying, this will conserve precious energy – especially when you have to get up for a 9am lecture. Also inform your university about your illness so they can advise you of the protocol for any extensions or extra help that you may need.
Be independent, but have a support system

Everyday things like cooking, cleaning, and doing your washing are definitely some of the less appealing aspects of student life. Independent living can be a challenge for any young person, but throw in a chronic illness and it gets tougher. I’ve learnt a few tricks to make life a little more manageable; online grocery shopping avoids lugging around shopping, and making sure I always have something easy to cook in the fridge means I can eat on an unexpected bad day.
It’s also important to make sure you have a few people around you that you can confide in, and fall back on. Not everyone needs to see the crash and burn and the days where getting out of a bed isn’t an option, but having the few that will come by to check on you or grab you something for dinner will make all the difference.

Learn to live with FOMO (fear of missing out)

RELYING ON YOUR INITIAL DIAGNOSIS CAN BE DANGEROUS.

RELYING ON YOUR INITIAL DIAGNOSIS CAN BE DANGEROUS.

In the past few months, I was reminded again how important it is that when you experience a new symptom, all avenues are explored before concluding your illness has added a new symptom.

I just lost a friend who for the past year was going to doctors for an ever-present headache. As she had been diagnosed previously, not much was made of her new symptoms and no tests were done. Finally, her heaches were so severe she was rushed to the hospital where tests were finally made. It was a dire diagnosis and her family was told she had only weeks to live. Tests indicated brain and stomach cancer but it was so advanced, there was nothing that could be done. Four days later she passed away.

Another friend of mine has had Lupus since she was a teenager. She is used to the flare ups and saw her rheumatologist on a regular basis. She then started having problems with her energy levels to such a degree that she was spending more time sleeping than staying awake. Her rheumatologist advised her that her Lupus was acting up and she would get over it.
Fortunately for her, the Rheumatologist retired and she got to see a replacement. When she related what had been happening to her, he immediately sent her for tests for her kidneys as well as her heart. Her heart turned out to be the culprit and without intervention she would have been dead in a few months.

Although these were extreme cases, there is also the possibility that a new symptom may be treatable and relying upon it being related to your present illness or condition may obscure any chance of getting relief.

It is important to remember that no matter what illness you have, it does not make you immune from getting anything else. To be safe, first get the new symptom checked out. Neither you or your doctor should feel confident that it is related to your present condition or illness.

Lydia
November 16, 2015

RELYING ON YOUR INITIAL DIAGNOSIS CAN BE DANGEROUS TO YOUR HEALTH

RELYING ON YOUR INITIAL DIAGNOSIS CAN BE DANGEROUS.
In the past few months, I was reminded again how important it is that when you experience a new symptom, all avenues are explored before concluding your illness has added a new symptom.
I just lost a friend who for the past year was going to doctors for an ever-present headache. As she had been diagnosed previously, not much was made of her new symptoms and no tests were done. Finally, her heaches were so severe she was rushed to the hospital where tests were finally made. It was a dire diagnosis and her family was told she had only weeks to live. Tests indicated brain and stomach cancer but it was so advanced, there was nothing that could be done. Four days later she passed away.
Another friend of mine has had Lupus since she was a teenager. She is used to the flare ups and saw her rheumatologist on a regular basis. She then started having problems with her energy levels to such a degree that she was spending more time sleeping than staying awake. Her rheumatologist advised her that her Lupus was acting up and she would get over it.
Fortunately for her, the Rheumatologist retired and she got to see a replacement. When she related what had been happening to her, he immediately sent her for tests for her kidneys as well as her heart. Her heart turned out to be the culprit and without intervention she would have been dead in a few months.
Although these were extreme cases, there is also the possibility that a new symptom may be treatable and relying upon it being related to your present illness or condition may obscure any chance of getting relief.
It is important to remember that no matter what illness you have, it does not make you immune from getting anything else. To be safe, first get the new symptom checked out. Neither you or your doctor should feel confident that it is related to your present condition or illness.
Lydia
November 16, 2015

PERSONAL DISCOVERIES

PERSONAL DISCOVERIES
One of the important things I learned about myself when the medical professionals, family and friends started treating me differently is that I was acting differently too. They were reacting to my reaction to my illness. When I would say I wasn’t feeling well, I would be upset that they said I didn’t look sick. For some reason it was important to me I guess that I looked sick and I didn’t like the fact that they couldn’t see that. It never occurred to me that they were actually trying to make me feel better. To me, I wasn’t believed.
It is only when I started taking it less personally and looking at it from their point of view, did I start to understand that they were afraid to say anything simply because of the way I would react. In other words, there really was no right answer. I would slink more and more into myself and of course the new person who was emerging was nobody they knew. Hence, on all sides, we were playing a former self of ourselves.
I think most of us in our lives when we are temporarily ill never really said anything about it except to say we were under the weather with a flu or a cold. We did not expect much sympathy nor did we give much thought as to whether we were believed or not. It just didn’t enter into the picture. However, when everything you used to do all of a sudden isn’t there anymore, you find yourself grasping at straws of normalcy. All of a sudden being believed has become a big thing.
For some reason, in my way of thinking everything would be okay if my friends and family would believe in me. When I really looked at the matter more closely, whether they believed in me or not, it did not change anything. Why was it so important to be believed? Those who cared about me would believe me and those who didn’t,we, there was nothing I could say or do to convince them and did it really matter?
I had to do a lot of talking to myself to get me to realize that no matter what, my real friends and family would be there for me and those others would come or go as time and circumstances changed. When I would say ‘every body’ left me, I had to look at what that really meant. My working friends. Yes, they left me. After awhile we had nothing in common anymore. Did I really want to hear about what was going on at a job I was no longer at? Of course not, and they in turn were busy with their own lives and that did not include a past employee of a firm. I started to remember that those who had left for other reasons, had not stayed in in touch with us and why would they?. They had moved on and were now involved in their new occupation and location. That put things in a much better perspective for me.
The “doing friends”. That was another category of friend. We would go to movies together or go out for a drink etc. As long as I was in a doing-mode, we had a lot in common, but once I was out of that mode, those doers kept doing and I was left on the side. Did I really want to hear where they went and what they did when I wasn’t able to join them? Of course not, so that too put a brand-new spin on things.
So, I learned, not to generalize and look at things as they really are. Sure, there may be those who do not believe you but that doesn’t mean ‘everybody’ doesn’t believe you. You will find that those who do are much more numerous than those who don’t.

Sheila’s Story

Sheila’s Story

When I look back on my life, with the knowledge & medical diagnosis that I now have, a lot of things make sense. I can say ‘Now I understand why’.

In 1997, at age 38, I was single & 4 years into a physically & mentally demanding career. In my effort to stay at work, I was having regular trigger point massage therapy to keep head & back aches manageable. I had also started wearing orthotics to correct a congenital foot defect that, I was told, was causing me to burn more energy than the average person every time I took a step.

Even with the massage & orthotics, I started to experience increasing episodes of fatigue unrelieved by sleep, multiple throat illnesses, head/back/body pain, until my body shut me down in Jan 1998. I ‘crashed’. I ‘hit the wall’. I felt & looked, like an exhausted marathon runner looks when they collapse, unable to move another step. A local physiotherapist tested for lactate while I was on a treadmill. He was surprised at my very high levels at low heart rates. He then used the same treatment he would recommend for a high level athlete who had overtrained, to reduce those levels. Unfortunately for me I never fully recovered & after one effort to return to work, had to stop working in March 1998.

I was eventually told by 3 different specialists that I “presented with CFS”. I refused to accept it My understanding & the main implication from a 1994 CFS reference book, was that CFS was primarily a psychological illness. How could a mental illness explain my leg weakness, my shortness of breath, my body aches & pains? I knew what depression was & this wasn’t it! I wanted to carry on with my life, my home renovations, my sports & my career. I didn’t want to be lying on a couch all day. I didn’t want my goals for the day to only be – get up, feed myself, make my bed & lay back down. There had to be something else wrong with me. No way was it CFS!

It didn’t help me accept that I had CFS, when in early 1998, while I was waiting for an explanation for my extreme exhaustion, a paternal first cousin got tired of waiting for medical help for her own exhaustion. After suffering with CFS for 15 years, she carefully wrapped up her affairs & took her own life. Was this my future if I accepted the CFS diagnosis? Not if I could help it! Denial is a wonderful thing sometimes.

With the help of a nutritionist- who explained that healthy calorie intake must match physical output & that yes I did need water, fat, salt & minerals in my diet & the ongoing help of the physiotherapist, I eventually returned to work after approximately 10 months off. I was assigned a different position to assist with my continuing fatigue & cognitive issues. My life consisted of eat, sleep, go to work, repeat. No more volunteering, no sports, no home renovations, no yard work. I made it work. I had to. I didn’t want to lose my home.

The next help came from a naturopath who prescribed thyroid (T3+T4), adrenal & mineral supplements. They helped enough to give me a bit of a life outside work. Thus with a healthy diet, supplements, pacing/rest & a new husband, life was pretty good. Every aspect of that life revolved around me getting enough rest to return to work but it was what we knew as our normal.

Then came the year 2010, when I thought it was time to lose weight & get in shape. Biggest mistake of my life. The symptoms that had caused my crash in 1998 returned. Starting with left leg weakness, back & head pain & ending months later with brain fog, dyslexia, stammering & word loss. I went off work in March 2011, never to return.

I had to see numerous specialists, (again). Most with no idea what was wrong with me but assurances that it wasn’t MS or Thyroid or Adrenal or Cardiac or Pulmonary or…..No diagnosis, no money thus my disability benefits were cut off. The only diagnosis, in early 2012, was somatoform disorder with a possible depressive episode & anxiety. I didn’t agree with anything but the anxiety but agreed to try medication. Two drugs & many months later, after not being able to tolerate either drug at proper dosage, I informed my doctor that I wanted to stop taking the pills due to their side effects. I no longer knew if my fatigue was due to my body or the drugs. We monitored my coming off the medication & determined that it had been contributing to my fatigue.

In mid 2012, I learned that my left leg weakness was another congenital defect. This time with the L5/S1 transverse processes. There is no cure but after a visit to a pain clinic, a recommendation of the Complex Chronic Disease Clinic application triage group in early 2013, I now receive facet joint injections a few times a year. My left leg works & the pain is greatly reduced.

In mid 2013, I saw a doctor who specializes in ME/FM. He officially diagnosed me with ME/CFS, told us the criteria I met & the category I fitted into. After numerous tests, he told us that I have issues that affect my mitochondria, immune system, brain, nervous system & thus my whole body. I cried, no more denial plus a doctor who not only believed & understood when I explained my symptoms but had no doubt what illness it was. He even offered a few suggestions that have helped to relieve my symptoms, although I’ve had to adapt them to what my body will tolerate. Lately we’ve added Immunovir to the list. So far I’ve noted more reduction of symptoms & hope that can continue.

After 16 years, I have had to stop denying that I have M.E./CFS & that the doctors were correct in 1998. As I think back on my life, I’ve probably had it since I was a child. I had just adapted my life to my low energy levels, which to me were normal. Then I had a career that I really wanted to keep & pushed my body beyond it’s limits, instead of listening to it. How was I to know the repercussions?

So now it’s 2014. I’m 55 & officially out of the workforce never to return. I had to hire a lawyer to get my disability benefits that had been denied. Mediation eventually resolved that issue this year. With the help of the CPP Disability Manual from the ME/FM Action Network & the specialist, I have been accepted for CPP Disability Benefits. My husband & I are slowly recovering from the stress of the last 4 years. I continue to try to recover from my 2nd major crash, unfortunately it is not as successful as after the 1st crash, with cognitive issues playing a much larger role this time.

I try to listen to my body more. I try to ‘PACE’. I often wear a heart monitor when active so as to stay in MY zone (<125 bpm). I do self massage & deep breathing with imagery, stretch, eat as healthy as possible, take supplements & Immunovir, drink lots of water & find joy/peace where possible. I'm not always successful at all of the above but what choice do I have but to try? I've seen the alternative & what it does to those left behind. Life is precious. Life is short. I will live it to the best of my abilities.

Sheila

In memory of Donna Desjarlai

The Forgotten’s Story

Dear Friends:

We have our first story written by a husband whose wife is ill. We get to listen to what it must be like to have someone who is chronically ill. I hope this opens up the door to others also participating as it is only through communication that wounds can be healed.

Lydia

NATUROPATHY

Dear Friends:
In Edith’s Story she relates how both medical doctors and naturopaths helped her to get better. I would like to hear from others who have had experiences with both and what has helped.
Email me at Lydia@mefmaction.com</stro Continue reading

Edith’s Story

IN SUPPORT OF NATUROPATH DOCTORS & OTHER COMPLIMENTARY HEALTH CARE SPECIALTIES

I’ve had fibromyalgia (FM) for almost 20 years. It started on Valentine’s Day in 1995, after a spinal injury. I spent the first 2 years in severe pain, exhaustion, nausea, brain impaired, and mostly in bed. After being referred to many specialists, a physical medicine specialist finally recognized what I had.

My M.D. gave me pain and sleep medicines which was of great help, but that was all he could offer me. When I realized that he did not know very much about this strange illness, it really scared me, and I decided to do my own research to see if there were other things out there that might help.

I started by joining the Winnipeg FM support group and made good use of their library. I also became a frequent customer of book stores, searching out and buying any books I could find on ME/CFS and FM. I bought a scribbler and kept notes on important information I found as at that time I could not retain the information I read.

One of the most helpful books I found was by Jacob Teitelbaum, MD entitled From Fatigue To Fantastic. His third edition is still in print, and he has a new one available entitled The Fatigue and Fibromyalgia Solution. This is a comprehensive guide on treatments he has used on his hundreds of ME/CFS/FM patients. As I followed his writings, I noticed that he was becoming more of an Integrative Practitioner, adding more and more natural remedies.

As time went on and I developed more FM problems, I decided to see a Naturopathic Doctor that a friend had recommended. It was the best decision I’ve made in the last 20 years!

On my first visit with my new N.D., he did not offer me a cure for FM, but he told me he would listen to my symptoms, do some lab tests and work on correcting the underlying causes of my health issues. The first lab tests came back reporting that I was fighting an entero virus. He got rid of it by using a herb, and my nausea stopped.

N.B.. He did not use an antibiotic! So, as he treated me for each difficult issue, I started feeling better and better.

I was curious, so I asked my N.D.. one day what kind of help his patients were looking for. He said that over 95% of them come to see him because they are sick, the rest want direction on how to keep their good health, and live a longer life. During some of my treatments at his clinic, I had a chance to speak to other patients and was absolutely amazed at some of the things he was doing to help them. It takes as many years of education to become a Naturopathic Doctor as a Medical Doctor. N.D’s are fully licensed by our government to practice in our country, and I know that my N.D. continues his education, always keeping on the cutting edge of his profession.
Many health insurance companies are now offering benefits for their clients to see Naturopath Doctors. You can bet your bottom dollar that they wouldn’t be doing that if these doctors were not getting people well and back to work as fast as possible, saving them “big bucks”.

For all of you that are ill, and are not getting the help you need, do your own research, and do not let anyone discourage you from seeking the medical help you need, from whatever health practitioner you deem appropriate. You may get most of your health and life back just like I did.

I HAVE INCLUDED A RECORD OF THE HEALTH ISSUES I HAVE HAD BECAUSE OF FIBROMYALGIA AND WHERE I GOT THE HELP.

EDITH
Teulon, MB

HEALTH ISSUES Medical Doctor Naturopathic Doctor

RETRO VIRUS YES

SLEEP DISORDER YES YES

PAIN RELIEF YES YES

HYPOTHYROIDISM YES

ADRENAL SUPPORT YES

DIGESTIVE TRACK YES

VITAMIN/MINERAL DEFICIENCY YES

ARTHRITIS YES YES

ALLERGIES YES

SEVERE MUSCLE SPASMS YES

COGNITIVE IMPAIRMENT YES YES

IMMUNE SYSTEM SUPPORT YES

HEAVY METAL DETOX YES

NUTRITIONAL SUPPORT YES

ESSENTIAL AMINO ACIDS REPLACEMENTS YES
[lab tested and was the most helpful
treatment I received]

NCR REALIGNMENT OF HEAD TO SPINE YES
[corrected my spine curvature.
painless (Google it]

NAET ALLERGY REMOVAL WITHIN 24 HOURS
[Done by a doctor of Chinese medicine. Some acupuncturists can also do NAET]
(google it)

CHIROPRACTIC WAS OF ENORMOUS HELP I SUFFERED SO MUCH LESS WHEN MY STRUCTURE WAS ALIGNED.

ACUPRESSURE WITH THUMB DOWN DEEP ON TRIGGER POINTS, HOLD FOR A BIT.
(great for releasing muscle knots)

PHYSIOTHERAPY FOR MORE SERIOUS MUSCLE PROBLEMS

FAR INFRARED DOME THAT FITS OVER BODY TO LOOSEN TIGHT MUSCLES WITH DEEP HEALING HEAT
[mine is from HTE CANADA]

STRETCHES EVERY MORNING RELIEVED SO MUCH PAIN AND STIFFNESS

EXERCISE- regular care of my home and walking.
[ I HAVE A CLEANING LADY COME IN EVERY 2 WEEKS TO DO THE VACUUMING AND FLOORS, AS THOSE 2 MAKE ME WORSE]

D-RIBOSE A SUPPLEMENT THAT GAVE ME MY LEGS BACK. THE STIFFNESS WENT AWAY AND I WAS ABLE TO WALK NORMALLY AGAIN. HEALTH FOOD STORE. NOW COMPANY 1 LB CONTAINER IS THE MOST ECONOMICAL

I WATCH WHAT I EAT CLOSE TO BEDTIME,AS IT WILL CUT DEEP SLEEP. ONLY AN APPLE FOR ME.

EAT LOTS OF PROTEIN AND A LOT LESS CARBOHYDRATES. HAVE MORE ENERGY.

REVITIVE FOOT MASSAGER IS EXTREMELY GOOD FOR LEG SPASMS AS WELL. HALF HOUR EVERY NIGHT BEFORE BED. LARGER DRUG STORES CARRY IT.

FLU SHOTS IN THE FORM OF BEADS, AS I CAN’T TOLERATE THE SHOTS. GET FROM MY N.D.

WILD YAM CREAM, A PRECURSOR OF PROGESTERONE CAN BE HELPFUL IF MENOPAUSAL
[HEALTH FOOD STORE. I FELT WELLBEING AND MORE ENERGETIC]

PRIMAL DEFENSE AND PROBIOTICS ARE EXCELLENT FOR THE DIGESTIVE TRACT
[HEALTH FOOD STORE]

I sincerely hope that this information will be helpful for other ME/CFS and FM sufferers. I would like to hear what has helped others in both QUEST and Lydia’s Unheard Voices: My Story.

Edith

BETWEEN YOU & M.E. II

BETWEEN YOU & ME II

THE JOURNEY

I thought I would make another section in my story passing on the things I have learned over the years. They were learned the hard way. Through trial and error I started to see what works and what didn’t work for me on both a personal as well as a business level. It didn’t take long for me to get the gist of the do’s and don’ts as the effect would be immediate.

I don’t want you to think for one minute that I have all the answers because I don’t. However, there is the martyr side of me that likes to think that if I had to go through all these experiences to learn what I needed to learn, I’d like to think that it won’t be for nothing. So then, in no particular order and as I recall the information I will pass on my musings to you. I hope you will find something I say of help to you.

Lydia

ARE YOU COPING?

Dear Friends:

Do you have a loved one in your life who is ill with ME/CFS and/or FM? Do you feel sometimes so overwhelmed that you want to run away and hide? When you care for a loved one who is ill, it sometimes seems that everyone is living their life around the sick person and their own lives are put on hold.

This is your chance to tell your story. As no one lets the ill person know how they are feeling, resentment can fester and eventually turn everyone’s life upside down. Take this opportunity to share your story so that we may know what it must be like to live with someone whose life has been put on hold and also has changed the lives of those around them.

The more we understand the feelings of others, the better we can cope and don’t let resentment stand in the way of a quality of life.

Please let me hear from you.

Email me at: lydia@mefmaction.com

Lydia

CHILDREN & YOUNG ADULTS

Hi There:

Have you got ME/CFS and/or FM? Have you ever thought about writing down how your are feeling and what you are thinking? Here is a chance to tell your story. You may think there is no one else who feels like you do or is not overwhelmed by the different emotions you are struggling with.

You are having difficulty coping in school or you are not able to attend school at all. This can be a very lonely and isolating time and it feels like others are moving on while you are stuck in a time warp.

I want to hear from you so let me know how you are doing and feeling. There are others who know what you are going through so please share your story so that they too will get the courage to speak and take comfort in knowing they are not alone. .

Email me at lydia@mefmaction.com

Lydia

Unheard Voices: The Forgotten

>UNHEARD VOICES: THE FORGOTTEN

FIRST OF ALL: WRITE ME AT lydia@mefmaction.com

In addition to Unheard Voices: My Story for those who are ill with ME/CFS and/or FM, I am also accepting stories from those who are living and/or acquainted with the person who is ill. They too deserve to be heard. Please pass on this message to those who would like to tell their story and remind them that their name and intimate information identifying them is not used or displayed on the website.

This is their chance to be heard and by seeing their stories, it will help those ill and those who know them. By understanding both sides, there is a chance to do more healing and get a better relationship which will benefit all.

Email me at lydia@mefmaction.com

Lydia

Edna’s Story

Edna’s Story

I am a retired US Navy nurse practitioner. I was commissioned into the Navy in 1996, immediately after completing my bachelors in nursing. I caught a flu while at work at in 1997. My temperature went up to 103.8 degrees Fahrenheit. I believe this is when I first became ill with ME/CFS. It took seven years to be diagnosed, even with wonderful doctors all around me. Then I was ostracized and tormented about my illness until I managed to retire but only after having to hire my own attorney at a whopping $15,000.00 – my entire life’s savings.

I managed to retire with my soul barely intact and moved to be closer to my sister and family, and find a part-time job which I love. However, I now see ME/CFS day in and day out in my own patients. These Veterans often became ill during their military service or deployments. One barely middle-aged man has been ill for 20 years without a diagnosis.

There is not only a lack of knowledge of ME/CFS, but an ignorance in diagnosing and treating. Even when the diagnosis is handed to another provider on a silver platter, it is often either ignored or simply refused acknowledgement. Patients continue to suffer, and I get more and more frustrated. Patients are diagnosed as bipolar, depressed, anxious, and psychosomatic and ME/CFS is never even considered in the differential. It is abhorrent.

This is just a touch of my own story, but I wanted you to know how my own illness has affected my desire to help others, and how my ability to help others continues to be blocked due to lack of appropriate knowledge.

Edna
U.S.A.