Author Archives: Lydia Neilson

REMEMBERING 25 YEARS………..

REMEMBERING 25 YEARS………

As you get repeatedly told ‘but you don’t look ill’ and if we do this or that, we would be better, I started to wonder what that must be doing to our way of thinking about ourselves and what that does to our image and our self-esteem.

On June 18, 2018 it was 25 years since I founded the National ME/FM Action Network and looking back over the years I remember the struggles our Network and I have had to deal with because of the perception of ME/FM.

I remember walking with one of our Directors into government offices and the representative meeting us and how dismissive they were. Some would even offer suggestions about how they knew we would be better if only we would stop convincing others and concentrate on ourselves more.

This has changed now but that has only been in the past couple of years. Although the perception has changed, we are by no means in an easier position to get what we need and what is pushing us forward is the united front our ME/FM community has established by not taking “NO” for an answer nor will we ever accept it.

There is a danger of us personally getting lost in the shuffle that a doctor visit can do to you with an unkind and insensitive remark, a friend who thinks you’re disloyal because yet again you had to handle the remarks due to another cancellation of a get-together you had planned.

I realized how important how ME/FM community is to all of us. It is not only for keeping up with medical and research data but also to make us visible to ourselves. By reading others’ stories, it confirms in us that yes, it is real. I am not imagining these symptoms. By being accepted as we are and not questioned about the legitimacy of our ill health, it reaffirms in us that we are not alone and there are those who not only understand but care about us.

It is important to all of us to support each other as we go through the many daily struggles we are going through and don’t become dismissive of ourselves by thinking we are invisible. That is only to the untrained eye and to those who didn’t care enough to educate themselves on your illness.
I get often asked what I would do differently about my illness, if I knew then what I know now. I have made kind of a list, not necessarily in the right order for anyone else but a list none the less.

1. BELIEVE in yourself. If you have a pain or any symptom, then that is what you have;

2. BE your own driver. Don’t let anyone steer your wheel when they are steering you in the wrong direction;

3. When you think you have come down with a flu or similar condition, if it doesn’t go away after a short period of time, get it checked out immediately;

4. GET another opinion, if your doctor plays down your symptoms and doesn’t give you the support you need;

5. DON’T worry about whether the doctor will think you are wasting his time. You are worth it and deserve their attention;

6. WHEN you apply for sick benefits and you get refused see a lawyer immediately. Check to see if initial consultation is free so that at least you can get early advised; At this early stage, sometimes only a letter from a lawyer is all you need to get your benefits;

7. CALL the lawyer to find out if the initial consultation is free, if it is, make an appointment as the information he provides to you can save you a lot of time and energy. You may have to make a few calls to find a lawyer who does consultations free but there are still many that do. When and if you have to go to court, lawyers will make arrangements with you and if the one you have will not, see another;

8. CHECK also if you qualify for a Legal Aid Clinic which is dependant on your earnings;

9. APPLY for disability which first is usually Employment Insurance, followed by Canada Pension Disability, Workmen’s Compensation. Do not take no for an answer. Some employers discourage Workmen’s Compensation as they worry about an increase in fees;

10. ENSURE you get proper medical reports to support your case;

11. CHECK the criteria for the disability you apply for as they are different and it will save you a lot of stress if you know beforehand what the criteria are;

12. to insurance disability, at first it is short term disability and you must prove your cannot do YOUR job. For long-term disability you have to prove you cannot do ANY job. For Canada Pension Disability it is not your illness that gets you your pension but rather how the illness stops you from working.

I hope some of this information is of help to the reader. Just remember that by going on the website of the National ME/FM Action Network under Resources and Legal, there is much information and guides to help you.

I can only stress again how important it is that you steadfast believe in yourself. You are managing your life and on the days you feel you can’t go on, hold on to the fact that you are not alone and we know and care.

Sincerely,
NATIONAL ME/FM ACTION NETWORK
Lydia
Lydia E. Neilson, MSM
CEO, Founder.

Having your back against the wall.

Having your back against the wall.

Good and Bad Exercises for Low Back Pain – WebMD

One of issues that people with ME/FM face is lower back pain. At any get-together, you look around the room and you see people leaning against the wall or using the back of chairs as support to ease pressure off their back and help with the lack of energy.

I used to think it was standing up is tiring which of course is true in our case but it is exaggerated by the pressure on our lower back. In my own case, even doing small tasks inevitably leads to pressure on my lower back and I am forced to sit down.

I decided to investigate if there was anything I could do to help myself. At one point, I tried physiotherapy but I don’t have enough energy to do all that is required. In my searches, I came across the information about good and bad exercises and of all the exercises shown, the one that was the least invasive for me was No. 7. It is standing with your back against the wall and slowly sliding down part way. I have done this about 3 times a day and I found it helps me.

The other link is to check for drug interactions that I check when I get a new medication. Your pharmacist can also help you with that but this is another alternative.

Please remember that this does not take the place of getting medical advice.

Lydia

https://www.webmd.com/back-pain/ss/slideshow-exercises

Drug Interaction Checker

https://www.webmd.com/interaction-checker/default.htm

http://unheardvoices.mefmaction.com/wp-admin/post-new.php

National ME/FM Action Network’s Canadian ME/FM Task Force Update

National ME/FM Action Network’s
Canadian ME/FM Task Force – UPDATE

Tuesday, June 5, 2018 – 11 a.m.

Margaret (Parlor) and I met with the Senior Assistant Deputy Minister of the Accessibility Task Team and with the Executive Director of the Office for people handicapeess.

On February 22, 2016 Margaret and I had a meeting with the Director-General of the Office of Disability Issues and Director of Parliamentary Affairs, at which time we presented the ME/FM issues that our community is faced with.

In the meeting on Tuesday, we pointed out that nothing had improved since that time and we therefore reiterated the difficulties the ME/FM community faces.

In May 2018 the National ME/FM Action Network had received a grant application, although numerous applications had been sent to other disability organizations in the past.

Before applying for this particular grant, you must first qualify as a disability organization which ME/FM organizations were not considered. Finally, we have passed this hurdle and from now on any communications to disability organizations will also include the National ME/FM Action Network.

We requested this meeting on Tuesday as the way the application is written, organizations with invisible disabilities are not in any position to qualify. On Tuesday we pointed this out to them that this is an oversight that must be corrected. The way the application is structured, the disability is presented under body functions and structure and as we have all these functions, both the Disability Tax Credit and the grant application ends up excluding the invisibly disabled. In view of this, doctors do not believe ME/FM people qualify for the credit.

Rather than basing disability under the body functions & structure, it would make more sense to base disability on participation and activity. [See model of disability analysis in newsletter 106].

In preparing for this meeting, Margaret and I went over the February 22, 2016 meeting which was published in our ‘Quest’, Spring 2016 quarterly newsletter. [Issues of Quest are available on the National ME/FM Action Network’s website from the beginning in 1993 to 2017. Current issues are to the Network’s members.]

As there are many disability issues covered in this newsletter relating to disability i.e. The Convention on the Rights of Persons with Disabilities (CRPD), Analyzing Disability, Dr. Alison Bested and Dr. Lynn Marshall’s Functional Capacity Scale and an Activity Log that some of you may not be aware of, I am referencing the Link to this newsletter for your information.

What is of particular importance of Tuesday’s meeting is that it was finally understood by the people at the meeting that people with invisible illnesses fall in a different category and are being overlooked and forgotten and are therefore not receiving the medical care and assistance they deserve.

We are encouraged by the willingness now to make changes. As matters develop, we will keep you informed of developments every step of the way.

Sincerely

Lydia

To view newsletter No. 106, please go to:

http://www.mefmaction.com/images/stories/quest_newsletters/Quest106.pdf

Remarks of the Honourable Diane F. Griffin, Senator for PEI

On Thursday, May 24, 2018 President, Margaret Parlor, and Lydia Neilson, CEO & Founder of the National ME/FM Action Network were invited by Senator Griffin to hear her speaking in honour of May 12 International ME/FM Awareness in the Senate. [No photographs or recording is permitted in the Senate].

In her speech, you will note that the Senator has two sisters-in-law with ME/FM.

The Network has been given permission to send thank-you notes to the Senator, and below you will find her email address and her website.

Diane.Griffin@sen.parl.gc.ca

Website: https://sencanada.ca/en/senators/griffin-diane/

SENATOR DIANE F. GRIFFIN
• Province: Prince Edward Island (Prince Edward Island)
• Affiliation: Independent Senators Group
• Telephone: 613-996-2140
• Fax: 613-996-2133

Senator Griffin statement

ME-CFS Registry

Announcement

Introducing Mike LaPenna

Mike has a sister who suffers from ME and has seen first-hand what the illness does to a person. He wanted to help and decided to start a ME-CFS Registry to help people be aware of research studies who are looking for people to take part on their studies.
Please find below links for answers to your questions and concerns.
CFS-ME Registry

MISSION

It is the mission of CFS-ME Registry to create the largest community of people inflicted with this illness. The purpose is to link researchers and doctors with our community. At this site, you won’t see much in the way of CFS/ME/FM definitions or news – there are many good websites that handle these areas. This is not a general information site but rather a very specific initiative to build a registry. Maybe over time the mission will expand once we’ve reached a critical mass! Thank you for your interest. Please pass on the word to fellow sufferers, researchers, doctors and support groups.

Mission

Frequently Asked Questions

Frequently Asked Questions

Statistics

Statistics

Sign Up

Signup

Privacy Policy

Privacy Policy

ABOUT Mike LaPenna and
HOW Did The Registry Come About and Why?

Because CFS/ME is less visible than most illnesses, we needlessly have so many people suffering, wasting their lives away. I read so many stories about people silently suffering, with pain and fatigue. And I have seen it first hand with my sister who has been suffering for over 20 years.

I have been thinking about ways to help, but since I am not a medical doctor nor researcher, my options were limited. So I decided to reach out to leading doctors in the field. I offered to perform data analysis, for free. No takers. By day, I am an information architect – I work with data and databases.

Eventually I thought about linking one type of data (CFS/ME sufferers) with another (CFS/ME researchers). Hence this website was born.
I hope the data collected will be an essential part in the ecosystem of people and information that will be needed when large scale research and medical trials take place. This is my way of volunteering my time to a global problem.

If you look for me on the internet, you won’t find much on social media like facebook and instagram (although I am getting a little better). The best place to find a little info is here on: LinkedIn.

Being With the Suffering Makes You Suffer Too

I lost my mom Rose to a formal diagnosis of fibromyalgia, many years ago. When she passed away, it had been 6 years since I had seen her, many Christmas days without her and times of celebration lost. Her condition of pain and swelling kept her from flying, visiting, enjoying life. I allowed the time to pass between us because life does that, it gives you permission to make excuses for being too busy or too stressed to be around family. I needed her and loved her but couldn’t spend much time with her before I felt overwhelmed. She was not able to be the mother I needed for support because of her diagnosis. She needed my help and support. I remember the call came that we lost her suddenly and I felt so guilty that I didn’t do more for her. I could’ve been there, helped her, made it easier for her. It wasn’t easy for any of us. We can’t forget her. Her heart attack most likely from lyrica or other pain meds is a tragedy. Being with the suffering makes you suffer too. The only way for me to live at peace with her condition would’ve been if there was a cure. I commend the doctors that promote anti-inflammatory discoveries. Dr Raymond Perrin, Yasmina, Dr Lapp, Dr Yasko, Dr Klinghardt, all genius contributors to the chronic illness field. May your work and legacy continue on much after you do, may you be recognised for your achievements in this lifetime,
may you accept my sincerest appreciation. Thankyou,

CL

When EBV lab test comes back abnormal, why does it translate into that it doesn’t mean anything?

Re: Simmaron Research

NEID Disease? Study Suggests Neuro, Endocrine and Immune Systems Work Together to Produce ME/CFS

By: Cort Johnson

January 26, 2018

I am no science genius and therefore had to make notes to myself in order to understand and absorb the information Cort Johnson related in his excellent article on Dr.Bruun Wyllier of Oslo Univerisity’s research.

For those who are either too ill to read the whole article or need a shorter version due to limited energy, I am sharing my notes with you, including explanations of keywords.

In Cort Johnson’s article, he states that Dr. Bruun Wyller of Oslo University had suggested that more research had to be done into the Epstein-Barr virus in ME/CFS. Now Dr. Wyller is looking at the interaction between the immune and endocrine systems.

Dr. Wyller began his new study reporting there was probably systemic inflammation present and B-cell functioning is impaired.

A *meta-analysis of 38 ME/CFS cytokine studies examining 77 *cytokines, only TGF-B was consistently elevated in 2/3rds of the studies. Cort Johnson doesn’t understand why TGF-B was not studied more, given it consistently shows up in studies. TGF-B can function as both an anti and pro-inflammatory cytokine depending on the situation it’s in.

Its three forms are involved in both inflammation and immunity and also affects or is affected by two stress-response systems in our bodies which appear to increase TGF-B levels and appear to also increase *cortisol levels.

In the past, Dr. Wyller used broad definitions for ME/CFS but this time used the Fukuda and our Canadian Consensus criteria (CCC) to determine if different definitions bring different results. It didn’t nor were TGF-B levels higher in adolescents nor was TGF-B associated with any clinical markers. It turns out that TGF-B is associated with increased levels of the stress hormones cortisol, *norepinephrine and *epinephrine in ME/CFS patients but not in controls. This association also corresponded with symptom severity. Dr. Wyller found that TGF-B levels were not important but the network they were embedded in was.

Cort Johnson says that we will shortly see from Dr. Klimas intense testing during exercise suggests exercise-induced immune activity trips off automic nervous problems in ME/CFS. Dr. Gordon Broderick’s studies suggest that cytokine levels don’t need to be high to have untoward effects on ME/CFS patients but simply depend upon where they are embedded in. Dr. Wyller believes a complex neuro-endocrine-immune interaction may be contributing to the fatigue and possibly to the EBV issues in ME/CFS. Dr. Wyller’s follow-up study will be to check interaction with EBV and determine how effectively the B=cells in ME/CFS patients respond to EBV in the presense of neuroendocrine hormones.

To read the entire article, please go to:

NEID Disease? Study Suggests Neuro, Endocrine and Immune Systems Work Together to Produce ME/CFS

Meanings:

META-ANALYSIS: Conceptually, a meta-analysis uses a statistical approach to combine the results from multiple studies in an effort to increase power (over individual studies), improve estimates of the size of the effect and/or to resolve uncertainty when reports disagree.

CYTOKINES: any of a number of substances, such as interferon, interleukin, and growth factors, that are secreted by certain cells of the immune system and have an effect on other cells.

CORTISO: another term for hydrocortisone aka a steroid hormone produced by the adrenal cortex and used medicinally to treat inflammation resulting from eczema and rheumatism.

NOREPINEPHRINE: a chemical released from the sympathetic nervous system in response to stress. It is classified as a neurotransmitter, a chemical that is released from neurons. Because the release of norepinephrine affects other organs of the body, it is also referred to as a stress hormone.

EPINEPHRINE: also known as adrenalin or adrenaline, is a hormone, neurotransmitter, and medication. Epinephrine is normally produced by both the adrenal glands and certain neurons.

When You Make Plan “A”, have a Plan “B”

“It’s stressful to go out or do things but not doing them has its own liabilities.”

When Dealing with a Chronic Illness, Make Sure You Have a Back-up Plan

By: Lydia Neilson

December 9, 2017

I thought I would share with you what I stumbled across. I was looking up information for a friend of mine who plans to start a company, I therefore began researching risk assessment methods for her so that she could plan her moves and avoid as much mistakes wherever possible.

As I started summarizing how to assess risks plan strategies, I noted that like looking at the pitfalls and warning signs of a business venture, our daily lives with a chronic illness pretty much resemble a business venture in the pros and cons of an endeavour.

Keeping that in mind, I decided to apply the same assessment plan to my daily schedule and see how it would stack up. One of the first things I learned about risk management was that you always have to have a contingency plan. I realized I didn’t have one. I had nothing to fall back on if Plan ‘A’ failed. Supposing I went to a friend’s house for a visit, did I have a way to get home if it turns out I became unwell or did I ask the friend in advance that if I became unwell, was there a place I could rest. No wonder I was stressed about going anywhere, I worried about what could happen but had taken no precautions for a back-up plan.

One of the items you address in a risk assessment plan is to identify critical business functions. In our case it would be basic activities of daily living, such as taking a shower, getting dressed, having breakfast. These are critical items and they were not even on my list.So I had toidentify the risks. That of course is obvious. I would say, if I shower, will I have enough energy to get dressed and have breakfast or would it make more sense to eat first so that I won’t be too tired to eat? I thought that was a very good consideration, especially on a bad day. In other words, I needed to prioritize my plans for the day.

By prioritizing I could minimize the impact and maximize the benefits of each action I took. Since our energy is concentrated on both physical and mental, I thought it would be to my benefit to alternate my activities between mental and physical work and that way have a more balanced day.

Next I decided to look at how long I could go before I reached that wall of not being able to go on any longer at whatever I was doing, keeping in mind I didn’t want to reach the crash point.
I discovered that also varies on a daily basis as it depended on first of all how I felt when I got up and if I had appointments I had to go to. If appointments were part of the day, then that day my necessities of the day and the appointment should be my main goal of the day. That’s where risk management comes in again, how to do that and so I must prioritize and minimize a waste of energy on things I cannot afford to do that day because of my priorities.

I now found I had a better understanding of how I could have better control of my day by not only seeing what my priorities were for the day but having a contingency plan, a back-up plan for when I couldn’t fulfill what I planned to do. I have less stress in my day as I don’t have to think about the “what if” of not knowing what I would do if I couldn’t do what I set out to do and or was in a different location.

By helping my friend, I also had a different understanding of how to live my life and be less stressed. I now stay alert of warning signs and the moment I realize that I have to change my plans, I don’t wait and agonize on what to do but am now prepared to deal with it as I have a back-up plan.

Now, when I go out with a friend for a social time, I will discuss with the friend ahead of time what I may have to do if I can’t stay. This way they are not surprised if or when it happens and they are also more understanding because there are no awkward moments to get over.

It is always understood that each person’s life has variables and what may work for me may not work for someone else. However, for me looking at my illness from a different perspective gave me more insight on how I can have better control of ME.

Lydia

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