Author Archives: Lydia Neilson

‘Hutspot’

‘Hutspot’

Hutspot is a Dutch dish and is a mash of carrots, potatoes, onion and meat.  In other words, a hutspot of topics.  I thought it was appropriate for a ‘hutspot’ of my roamings that I want to share with you that I thought might be of interest.

Journal – Disability and Rehabilitation

Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter

Keith J. Geraghty & Charlotte Blease

Received 28 Mar 2017, Accepted 22 May 2018, Published online: 21 Jun 2018

Content:  In this review article, the objective was to bring to light how people with ME/CFS  reported distress and dissatisfaction following their medical encounters.  It explains the methods used and what the results were.

For details, please go to:

https://www.tandfonline.com/doi/full/10.1080/09638288.2018.1481149?src=recsys

The American Journal of Bioethics

What’s in a Name? The Ethical Importance of Respecting a Patient’s “Unexplained” Medical Concerns

Kayhan Parsi & Nanette Elster

Pages 1-2 | Published online: 26 Apr 2018

In this Guest Article, the authors relate how it has become evident that labelling certain conditions as having a biological cause and others having a primarily psychosocial cause is ‘outdated’ and ‘reductionistic.  

https://www.tandfonline.com/doi/full/10.1080/15265161.2018.1461467?src=recsys

U.S. National Library of Medicine

ClinicalTrials.gov

There are 144 studies under the title of chronic fatigue syndrome and Myalgic Encephalomyelitis, some are completed and others are recruiting and several are unknown, according to the National Institutes of Health (NIH)

To view, please go to:

https://www.clinicaltrials.gov/ct2/results?term=chronic+fatigue+syndrome&Search=Search

frontiers in Pediatrics – Pediatric Neurology

Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Lily Chu etal – February 5, 2019 (Stanford ME/CFS Initiative

The objective of this research article was to describe ME/CFS onset and its course in one U.S.-based cohort using 150 subjects fitting Fukuda 1994 CFS criteria.  The article highlighted the underexamined aspects of ME/CFS and propose new interpretations of findings.

https://www.frontiersin.org/articles/10.3389/fped.2019.00012/full

BMC – Journal of Translational Medicine

Diagnostic sensitivity of 2-day cardiopulmonary exercise testing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Maximillian J. Nelson etal March 14, 2019

16 ME/CFS patients and 10 healthy controls underwent two cardiopulmonary exercise tests (CPET0 on 2 consecutive days.

For tables and details, please go to:

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-019-1836-0

frontiers in Neurology

Neuroinflammation and Cytokines in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Critical Review of Research methods

In this review, 3 specific methods were used to study the neuroimmunology of ME/CFS, namely PET (positron emission tomography), MRS (magnetic resonance spectroscopy) and assays measuring cytokines in blood and cerebrospinal fluid.

This study focuses on what these methods can and cannot conclude.  

For details, please go to:

https://www.frontiersin.org/articles/10.3389/fneur.2018.01033/full

“Meghan’s” Story

“Meghan’s” Story

Thought I would share a summary of what has recently happened to me …

Since the month of March, I was feeling more and more exhausted, and did not know why.  I was also increasingly out of breath from very little exertion – like just walking across a room!  Unbeknownst to me, my auto-immune system was attacking my red blood cells, and was killing them. 

The way this progressed is a case study in incompetency …

  • In October 2018, the rheumatologist I was seeing told me my red blood cell count was 132(this is within the normal 130-140 range)
  • When I saw him in March, he showed some surprise that it  had  gone  down  to  112,but did not seem alarmed and simply said “we’ll keep n eye on it”
  • He did send a note to my family doctor about it, but she took no action.  I actually had to finally go see her to try and find the cause of my exhaustion.  That is when she clued in to the red cell count results she had seen from him and had me go for another blood test to see where it was at now. At that point the number was at 73
  • That meant a 40 point drop in just 2 months!  This was no ordinary anemia – something very strange was going on!
  • But even then, my GP did not react immediately like she should have.  When she got the “73” result, she had her receptionist call me and book an appointment for 5 days later, so she could tell me this in person!  Turns out, those 5 days could have lead to disaster …. 
  • When I went to see her, 5 days later, she said that what was happening could lead to total heart failure, so she was urgently referring me to a haematologist.
  • The haematologist received my file the very next morning, and had me come in immediately.  My blood was tested again, and in the space of a week, the number was now 59!  She told me in no uncertain terms that I had to get to emergency immediately, because I needed an urgent blood transfusion to stop the destruction.
  • It seems that 70 is the critical cut-off point – anything below that can lead to fatal results.  By the time I got the first transfusion in the ER at the hospital, my number was in the low 50s!  I had no idea that, by then, all my organs were getting less than 40% of the oxygen they need to function, because of the extremely low red blood cell count.
  • While in hospital, I was followed by 3 teams:  Internal Medicine / Haematology / Rheumatology  –  all trying to determine exactly why this happened.  I had transfusions and have been given some very powerful medications that I have to take for a while.  The transfusions themselves were very risky for me because they had to match the anti-bodies in my blood, and there was some trouble finding the right blood.  The wrong anti-bodies would have spelled disaster.  However, the right anti-bodies could also spell disaster, because they could have joined up with mine and started to multiply exponentially, which would have spelled mega disaster!  So it was an iffy proposition, but the only way to try to turn things around.
  • I spent 4 days in the ER section, which was pure hell.  The chaos and activity around me nearly drove me over the edge, and I did not sleep even 5 seconds during all that time.  I did threaten to just leave and go home, but they warned me that such a decision would be fatal, so I stayed and continued to beg to be moved to a room.  That finally happened later that day.
  • I was released from hospital last Thursday evening, after nearly 11 days there.  I am still pretty weak and shaky and facing a long period of recovery, but at least the crisis is behind me.  I cannot believe the number of medications I will need to take for the next while, in order to re-stabilize my immune system and make sure it does not return to killing off my red blood cells.  
  • At least now I know what symptoms to look out for if things start to get worse again.  I had no idea how close I got to total heart failure or coma, until they kept telling me that over and over in Emergency!  
  • For the foreseeable future, I will be followed by a haematology team on a weekly basis, so they will surely keep an eye on things, checking my blood levels constantly, so things will be under control.  
  • The recovery promises to be a slow one (so they all say) but I have taken the first steps and it will be all uphill from here on.  All the meds are the biggest challenge – I have never taken more than one or two, and now I have an arsenal of medications to deal with (here’s hoping the lists of side effects do not rear their ugly heads in my direction).   Until my immune system rebuilds itself, I also have to avoid contact with anyone who has the flu or any kind of infection, so that will be a challenge considering all the hospital and doctor visits in my near future.
  • Oh, the joys of inheriting an auto-immune disease from my Dad!  My Dad had an auto-immune disease (rheumatoid arthritis) so I seem to have inherited the auto-immune gene from him, but in my case it attacked the red blood cells instead of the joints.
  • So, here I am.  Back home.  Happy to be out of hospital, but a bit frustrated that I really can’t do much because the whole things has totally exhausted every ounce of energy right out of me, and it will be some time before that changes. 
  • So that is the story.  Goes to show that you never know just how close you can get to the brink.  I certainly was lucky this time!  But I confess that I will be looking to change family doctors and rheumatologist – looking for someone who reacts in a more timely fashion to things going this whacky.

 “Meghan”

Canada

The Lady with the Lamp

The Lady with the Lamp

In anticipation of May 12th, International ME/FM Awareness Day,  This date was chosen as it is Florence Nightingale’s date of birth.  Below is a short story of some of her accomplishments but to read more details, please see the URL below.

Florence Nightingale was born on May 12, 1820 in Florence Italy and died on August 13, 1910.  She was a British nurse, statistician, and social reformer who was put in charge of nursing British and allied soldiers in Turkey during the Crimean War.  Nightingale wandered the wards at night with a lamp and became known as The Lady with the Lamp as she provided support and personal care to the wounded soldiers.  

In May 1855 Florence Nightingale began the first of several excursions to Crimea.  However, shortly after arriving,  she fell ill and experienced a slow recovery as it was thought she had brucellosis. She experienced some recovery but suffered the lingering effects for 25 years, confining her mostly to her bed because of severe chronic pain as well as suffering from exhaustion.

Florence Nightingale’s greatest achievements are centred around creating social reform in health care and nursing.  Due to Nightingale’s statistical data and analysis, a Royal Commission was established on her findings which resulted in marked reform in the military medical and purveyance systems.  Her Notes on Nursing: What It Is and What It Is Not has been continuously published since 1859.

Lydia

https://www.britannica.com/biography/Florence-Nightingale/media/415020/88537

CANADA-WIDE request for ACTION

Myalgic Encephalomyelitis Association of Ontario (MEAO) and

National ME/FM Action Network

Request Release to the Public of the Final Report of the Task Force on Environmental Health.

Denise Magi, President of MEAO, was one of the members of this Task Force and at one point the Report was on hold due to the provincial election.

Denise Magi advises that the Final Report of the Task Force on Environmental Health was presented to the Ministry of Health and Long Term Care by December 21, 2018 and the Task Force mandate was completed.

Denise Magi is given to understand that Minister Christine Elliott and her staff have been focusing their agenda on the creation of a proposed Ontario Super Health Agency and there has been no communications forthcoming to MEAO on the outstanding Final Report for release and implementation.  

HOW YOU CAN HELP:

  • Contact your local MP urging the release to the public of the Ontario Task Force Report on Environmental Health.

PLEASE Note: This report is important as the information contained therein can then be shared with all provinces and territories so that time can be saved in implementing this Report into action.

This is the first Task Force set up directly addressing Myalgic Encephalomyelitis (ME), Fibromyalgia (FM) and Environmental Illness (EI).

For information on MEAO, please see:

Email: info@meao.ca    www.meao.ca  

Tel.416-222-8820   –  Toll-free 1-877-632-6682

Sincerely,

NATIONAL ME/FM ACTION NETWORK

Lydia

Lydia E. Neilson, MSM

CEO, Founder

LINDA’S STORY

I was finally diagnosed with CFS/ME, after almost 5 years of being very ill all the time and not knowing why. 

I had to go on long-term disability insurance (LTD)  2 years ago. I have since done extensive research into this disease and realized how incredibly serious this disease is.

I am astounded and very disappointed that our Canadian medical system has been so short-sighted in recognizing this disease and collaborating with the researchers in the United States and elsewhere that have already achieved great advances in understanding this disease. 


There seems to be very conclusive evidence that this is a mitochondria dysfunction disease that does not allow our bodies to convert the food we eat into the energy our bodies need to function. It seems this happens most often after a serious flu or virus, which is what I experienced. 

Because of the limited understanding and scepticism of the medical professionals we rely on to diagnose, I was considered to have a sleep problem for which I should recover from?


The LTDI insurer ordered me to do water physio three times a week and see a Psychologist once a week (this was after their own Psychiatrist advised them that I had no Psychiatric issues and just needed to sleep). 

Fortunately for me, the Physiotherapist in charge of my water therapy listened to me when I told him that any exercise or just simple things like walking from the bedroom to the kitchen made me weaker. He measured my muscle strength throughout my entire body before I started the physio and advised me that where in most cases I should be exerting a pressure of “60”, I was exerting a pressure of “6”. He then measured again after two weeks of exercise and found that most of those measurements became even lower. 

I pleaded with the insurance company to stop this process and they were refusing until both the physiotherapist and the Psychologist both advised my insurance company in writing that I should stop the physio and the counselling as they were making my health worse.
Because they found I had severe sleep apnea, the insurer assumed that was the end of the story and I would be well again. Unfortunately, the sleep specialist had to show that even with a CPAP machine my condition would not improve, which required me to adjust to a CPAP machine which took about a year and then do another sleep test. It was after the second sleep test that the diagnosis of Chronic Fatigue Syndrome was made.


The whole last 5 years I have been telling doctors that I am weak all the time, don’t sleep, feel worse after exertion of any kind and a myriad of other changes and symptoms, yet it took 5 years and many judgemental people (non believers in the existence of Chronic Fatigue Syndrome), before I received a diagnosis. I am still having to deal with case managers at my insurance company that you get a sense they don’t believe your diagnosis. What a deplorable system.


I nearly lost my marriage of over 40 years and am now almost always housebound. Though I may sound angry here, I am hopeful and try every day to maintain some form of a normal life. I have learned to call a good day when I have enough energy to have a shower and cook a couple meals or do the dishes. I am fortunate to have a spouse that is now retired and supports me. I am also fortunate to have a LTDI plan that supports me so far. 


The worst part of this disease is dealing with the severely debilitating weakness and the frustration and anxiety of dealing with all of the disbelievers in the medical system and general public who still believe in Canada that this is more of a psychiatric issue than a real medical state of complete systemic disfunction.
I am grateful to people, such as yourself, who are out there advocating for education. 

Linda

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.

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