Functional Capacity Scale

FUNCTIONAL CAPACITY SCALE

The Functional Capacity Scale incorporates energy rating, symptom severity, and activity level. The description after each scale number can be used to rate functional capacity.

0 = No energy, severe symptoms including very poor concentration; bed ridden all day; cannot do self-care (e.g. need bed bath to be given).

1 = Severe symptoms at rest, including very poor concentration; in bed most of the day; need assistance with self-care activities (bathing).

2 = Severe symptoms at rest, including poor concentration; frequent rests or naps; need some assistance with limited self-care activities (can wash face at the sink) and need rest afterwards for severe post exertional fatigue.

3 = Moderate symptoms at rest, including poor concentration; need frequent rests or naps; can do independent self-care (can wash standing at the sink for a few minutes) but have severe post exertion fatigue and need rest.

4 = Moderate symptoms at rest, including some difficulty concentrating; need frequent rests throughout the day; can do independent self-care (can take a shower) and limited activities of daily living (e.g. light housework, laundry); can walk for a few minutes per day.

5 = Mild symptoms at rest with fairly good concentration for short periods (15 minutes); need a.m. and p.m. rest; can do independent self-care and moderate activities of daily living, but have slight post exertion fatigue; can walk 10-20 minutes per day.

6 = Mild or no symptoms at rest with fairly good concentration for up to 45 minutes; cannot multitask; need afternoon rest; can do most activities of daily living except vacuuming; can walk 20-30 minutes per day; can do volunteer work – maximum total time 4 hours per week, with flexible hours.

7 = Mild or no symptoms at rest with good concentration for up to 1⁄2 day; can do more intense activities of daily living (e.g. grocery shopping, vacuuming), but may get post exertion fatigue if ‘overdo’; can walk 30 minutes per day; can work limited hours, less than 25 hours per week; no or minimal social life.

8 = Mild intermittent symptoms with good concentration; can do full self-care, work 40 hours per week, enjoy a social life, do moderate vigorous exercise three times per week.

9 = No symptoms; very good concentration; full work and social life; can do vigorous exercise three to five times a week.

10 = No symptoms; excellent concentration; over achiever (sometimes may require less sleep than average person).

[Dr. Alison Bested © Dr. Lynn Marshall. May be copied for individual use.]

Ignoring Warning Signs As Being Typical ME

I am a member of #MEAction +55 and one of its members put out a question if there were people who had had heart attacks and if so, would they relate their story to warn others.

I posted the following and thought I would share it with you in the hope that others won’t make the mistake I made which almost cost me my life.

I have had ME since October 1986. Like everyone, you get used to the symptoms that constantly change so I started saying “Ok, now what?”. In October 2003 my late husband and I were going to visit a friend in Toronto. I was having blood pressure problems at that time and was being monitored as to whether or not I should go on medication.

On this particular day that we were supposed to leave, I woke up in the middle of the night as my left arm was hurting to the point I had to hold it up high to get relief. I was sweating and had an odd feeling of not feeling well and my jaw was hurting. I got up and took some pain medication and said to myself, I think I am having a heart attack. However, the medication somewhat relieved the symptoms and I went back to bed.

In the morning, the pain started to return but I had this odd flushed feeling and nausea that was different from other occasion. My husband said, let’s go to the emergency department of the hospital and get your blood pressure checked before our trip as once on the road, it will be hard to stop. So that was what we did.

I apologized for bothering them and then asked them to take my blood pressure. The nurse took my pulse and yelled for someone else. The next thing I remember, I woke up 3 days later. My husband told me that he was sitting in the waiting room for me to come up but instead he heard Code Blue on the loudspeaker and medics were running into my room. He got scared and followed them into my room and at that time, they had to start my heart twice.

It is important to get help the moment you have a heart attack so that a certain medication can be given to you which only can be given during a certain period of time. They told my husband that I went past that period and didn’t think the medication would work anymore because of the length of time that had passed. The emergency doctor decided to give it to me anyway and it worked. Since then I have learned that there are others with ME who have had heart problems or heart attacks as the routine checks given for heart are not enough to recognize a heart problem. I had always had a strong heart but since there so many strange things that was happening to me symptom wise, I didn’t consider this one any different which almost cost me my life. If I had not been at the hospital, I would have died.

I learned never take your symptoms for granted. If they change, first get them checked out by your doctor, and if nothing gets found, then at least you know it is just another symptom. If your heart is acting up, request an appoint with a cardiologist as GPs only do routine tests.

Lydia
11/24/18

A Chance To Be Heard

Dear Friends:

A chance to be heard –

The Government of Canada asks what Canadians would like to see in the next federal budget. This is the time for the ME/FM community to let our voices be heard.

The National ME/FM Action Network has prepared a letter for the Minister of Health with a copy to the Minister of Finance and a copy to your local Member of Parliament. You need the address for your local Member of Parliament, regardless of which party you choose. The envelopes need only to be addressed and no stamp is needed. Please encourage relatives and friends to do the same thing.

President, Margaret Parlor, of the Network met with an assistant of a Minister just recently who advised her that she had only heard about ME/FM about a month before. How is that possible, she asked? What that tells us is that the top officials are not advised as those seeing communications do not believe the information is important and do not refer it to the Minister in charge.

The National ME/FM Action Network has been communicating with the government for over 25 years and other organizations have done the same for the length of their existence. As long as there are people in influential positions who refuse to take ME/FM seriously, nothing will change.

Please take the time for your voice to be heard. The time is now until January 28, 2019.

Don’t react to unfairness but ACT for CHANGE.

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

http://www.mefmaction.com/index.php?option=com_content&view=article&id=549:participating-in-pre-budget-consultation&catid=69:networknews&Itemid=287

Why does my accent become more pronounced with a Migraine?

Why does my accent become more pronounced with a Migraine?

Along with ME/CFS, I started getting migraines and with that come to the warning signs that having been ill since 1986 I should be used to and able to cope with. The funny thing is, each time it happens, it is as if it is for the first time.

Once the full-blown migraine shows its ugly head, I get enlightened and know the other symptoms are related to the migraine. However, for some reason I can’t get it to my head it is the migraine until it actually arrives.

With me, a few days before my eyes have even more trouble coping with lights and noise and I start to have difficulty with completing thoughts, stumbling over my words and not to mention slowing-down my thinking process. I always have to absorb conversations before they seem to hit my brain and I can respond. Difficult enough and now I started noticing that my Dutch accent which is not too noticeable until I am coming down with a migraine. Why is that?

I usually don’t notice how I speak but when the migraine appears, I become very conscious of the fact that although I don’t sound like I just arrived but certainly don’t sound like I’ve been here a long time. This may not seem important to some people but I find it utterly frustrating and embarrassing. I try to avoid conversations wherever I possibly can and come across as an unusually great listener.

Lydia
11/13/18

Why Re-Invent the Wheel.

To Whom It May Concern

WHY Reinvent the Wheel?

This year in June, the National ME/FM Action Network is in existence 25 years. When the Network surveyed medical professionals as to what they felt was the most important for diagnosing ME, and the response was unanimous that a working case definition was necessary. It became the Network’s goal to make it happen.

In 2003 the National ME/FM Action Network spearheaded the Clinical Working Case Definition of ME/CFS and one for FM. which became world-wide known as The Canadian Definition. Its Overviews summary was translated in five languages, English, French, Spanish, Italian, Dutch and now in Japanese by other countries.

As the U.S. Centers for Disease Control & Prevention’s (CDC) definition was primarily to standardize research, it was felt it would not be appropriate for clinical diagnoses. The Consensus Panel’s extensive clinical experience for diagnosing and/or treating ME/CFS patients was more than 20,000. Of particular note is the inclusion of PEM (Post-Exertional Malaise and neurological/cognitive manifestations.

On July 20, 2011 the Journal of Internal Medicine published Myalgic encephalomyelitis: International Consensus Criteria by: Carruthers etal

This Journal is an update to the 2003 ME definition which was used as a starting point. In this update, significant changes were made due to more scientific data as well as data supported by a study of more than 2500 patients that determined which symptoms had the greatest efficacy to identify patients with ME.

Please let us go forward by all being on the same page and agree on the ICC, ME International Consensus Criteria. Once a criteria is in use, doctors will be able to diagnose patients earlier and may even stop those ill from becoming severely ill. Whether it is ME or CFS becomes a non-issue as the criteria would determine that.

Myalgic encephalomyelitis: International Consensus Criteria

Wiley Online Library

Journal of Internal Medicine – Open Access

https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2011.02428.x

Canadian Clinical Definition for ME and/or FM
http://www.mefmaction.com/index.php?option=com_content&view=article&id=215&Itemid=262

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

Dr. Charles Shepherd on Flu vaccination and ME 2018-19

Flu vaccination and M.E. (2018-19) by Dr. Charles Shepherd

Dr. Charles Shepherd, Hon. Medical Adviser of the UK ME Association, states there is no simple answer to that question but provides the most up to date information. Dr. Shepherd also advises that you and your doctor should make the final decision as to whether or not it will minimise the risk of catching an infection, “especially for someone already struggling with M.E.”

Dr. Shepherd explains the Science behind flu vaccines as well as make a free leaflet available for download.

For details, please go to:

Flu vaccination and M.E. (2018-19) by Dr Charles Shepherd | 12 September 2018

GOVERNMENT of CANADA on Prevention of flu (influenza)

This page outlines the various ways that you can minimize catching the flu. For details, please go to:

https://www.canada.ca/en/public-health/services/diseases/flu-influenza/prevention-flu-influenza.html#s1

Flu (influenza) awareness resources

https://www.canada.ca/en/public-health/services/diseases/flu-influenza/flu-influenza-awareness-resources.html

Flu clinics and resources from across Canada

http://www.healthycanadians.gc.ca/diseases-conditions-maladies-affections/disease-maladie/flu-grippe/clinic-clinique-eng.php?_ga=2.151520761.1744575968.1538484210-700148750.1490332797

For health professionals: Flu (influenza)

For details, please go to:

https://www.canada.ca/en/public-health/services/diseases/flu-influenza/health-professionals-flu-influenza.html

QUEST No. 166 – FALL 2018 Contents

*QUEST Newsletter #116 FALL 2018

Publishing Date – September 2018

CONTENTS:

Remembering 25 years……..

CFS/ME International Conference 2018

Important Announcement on CPP-Disability

SAGE journals –

New Norwegian Study Suggests CDC IOM
ME/CFS Diagnostic Criteria Tend to Select
Patients with Depressive Symptoms

The Canadian Press –
[The College of Physicians & Surgeons of BC]

Having your Back against the Wall

What’s Up @ CIHR?

ME Research Conference Report: London,
UK June 1, 2018

Health Rising
[Dynamic Duo – By: Cort Johnson

AND As the Race Continues – Updates

Open Medicine Foundation funded Severely
Ill Big Data Study (OMF)

OMF Update on Study

LiveScience – NEWS

SAGE journals

Information of Interest

*QUEST included with annual membership to the National ME/FM Action Network.

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.

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

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

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

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