Orphan patients in No Man's Land
May 12 is World ME Day - Much needs to be done for those living with post-viral disease since even before COVID
UPDATE from #MEAction added below on May 16
Myalgic encephalomyelitis aka Chronic Fatigue Syndrome (ME/CFS) has been described as one of the few remaining, highly prevalent, debilitating diseases about which very little is known. What is known is that it is a post viral neuro immune systemic disease caused by other infectious agents. Many patients with ME/CFS also present with multiple chemical sensitivity (MCS) or “environmental illness”, which severely restricts where they can go and whom they can associate with. This is because tobacco smoke, insecticide, scented personal care and laundry products used by others nearby can trigger a wide range of symptoms including dizziness, nausea, life-threatening asthma attacks, confusion, trouble concentrating, memory problems (brain fog) and more.
As explained by MillionsMissingCanada,
The hallmark symptom is post exertional neuroimmune exhaustion, also known as post exertional malaise (PEM), meaning even small amounts of activity (physical
and/or cognitive) cause an increase in symptoms. For a person with moderate ME, walking up 2 flight of stairs may trigger disabling symptoms immediately or 24 – 48 hours later and take 2 – 4 days to recover. For severe ME, showering may cause disabling symptoms. Twenty-five percent of people with ME experience symptoms of such severity that they are homebound or bed bound. The Institute of Medicine in the US called ME ‘systemic exertion intolerance disease’ (SEID) to denote the key symptom.
The Canadian Institutes of Health Research have found that approximately 600,000 individuals suffer from ME in Canada with a female to male ratio of 4:1. (Given that so few people in Canada are aware of this condition, this disease is likely quite underreported so a million is a more realistic statistic. This can well amount to one in 36 people in this country.)
For a better understanding of ME/CFS (and by extension of Long-COVID/ or Post-Covid infection Syndrome aka PCOiS) try answering this Mythbusting Quiz and considering the information the answer key contains. Note: that while the references are around 15 years old, nothing much has changed in the lives of ME/CFS patients in the past 15 years.
See also this list of common myths around ME/CFS which have all been debunked:
https://ajourneythroughthefog.co.uk/2019/05/common-myths-about-me-cfs-debunked/
For anyone asking: How can I help provide awareness for those suffering with ME/CFS, especially given the upcoming May 12 date?
Here are a few suggestions:
Subscribe to updates from the ICanCME Network and consider donating to support research and awareness initiatives
Follow the Canadian National ME/FM Action Network via their website or on Facebook or Twitter.
Or MillionsMissingCanada on Instagram; as well as on Facebook or Twitter. See their guide for advocacy here.
Look for and support any ME Society in your part of the country. Keep in mind that often these groups are very small, consisting mostly of already stretched caregivers of people with the illness, so additional healthy, compassionate volunteers are dearly welcomed. The Edmonton ME Society for example called for volunteers to deliver Christmas food hampers to the homes of ME patients - so check with these societies to ask for suggestions for practical help year round, not just around May 12.
Follow the livestream of #MEAction (US) this upcoming May 12. An installation of cots will be featured to represent the countless people bedridden by this disease.
Ask your local public library to stock these documentary movies on ME/CFS and find ways to access and view at least one of them https://www.themoviedb.org/keyword/241306-cfs/movie. Also encourage your local library or bookstore to stock copies of Valerie Free’s well-researched book Lighting Up a Hidden World: CFS and ME.
Participate in and promote the awareness activities of international ME/CFS support organizations such as: Solve ME; #ME Action; Millions Missing Canada; DespitePain, and many more
Consider donating to support the research now underway under the umbrella of the Open Medicine Foundation and its Canadian collaborative research centre led by Dr. Alain Moreau. Keep in mind that it will certainly take a lot of time for research findings to make their way into initiatives that improve the everyday lives of ME and LongCOVID patients. But we all need to start somewhere.
Follow those writers on substack.com who pull together ME and LongCOVID research. For example, research on proteolyitic enzymes such as Nattokinase seems promising. See:
Writers at this substack also posted this summary document with technical details of possible interest to some: https://docs.google.com/document/d/1X3dNPgEuQ2j8x7w8OqLEDP7l2z8_SSgMN-XdM8Uk58Q/edit#heading=h.pglrww3y0ib9
share the suggestions in the letter below with the general public as well as elected officials.
likewise, share this article on “Orphan Patients” written by Dr. Arnie Voth upon his retirement: https://cpsa.ca/news/guest-column-the-orphan-patients/
When dealing with your own health care providers, ask them how aware they are of the needs of those dealing with post-viral infectious diseases going back further than Long COVID. Share this link to an excellent clinicians’ resource guide with them as they may be encountering more peeople to diagnose with post-COVID infection or post-COVID vaccination ME. https://nap.nationalacademies.org/resource/19012/MECFScliniciansguide.pdf This guide includes data such as:
Also share the link to this seminar talk by Dr. Lucinda Bateman entitled ME/CFS 101. She is recognized worldwide as an expert in the diagnosis and treatment of ME/CFS.
Here is an update from the ME advocacy group: #MEAction - to give readers a sense of how appreciated ME and Severe ME patients are for every voice of advocacy (being the voice) taking place in among the wider community.
Dear friends,
#MillionsMissing-May 12th, 2023 was an emotional day for those attending the art installation in person and for those at home. Hundreds of passersby, many who had no idea what ME was, were stunned with the image of 300 beds beside the Washington Monument, and most importantly, the pillowcases. Your stories reminded everyone that this installation was for the millions of individuals who deserve more, it was for YOU.
This amazing community brought so many people together. We reached over half a million on social media. On Instagram alone, we know that 85% of those we reached were not followers. Critical goals of an action like this include reaching undiagnosed people so they can find answers and attracting new allies ready to fight for change. We heard back from people who had never heard of this illness but the symptoms rang true to the undiagnosed illness they had. We heard from others who were shocked that they had never heard of this and willingly shared information to educate others.
We also had so many beautiful responses from our community: the ones who felt seen and empowered; ones who cried at the recognition; ones who joined us in mourning those we have lost; and ones who were thankful to not be forgotten.
There will soon be an online gallery where there will be more opportunities to share this powerful event, your pillows, your stories, and our fight for justice. Our staff is having a short rest to recover (and we hope you are too) and then we will be back on the fight to continue to use this moment for action.
In solidarity,
All of us at MEAction
PS: #MEAction’s work continues. Donate today to make sure our important work of fighting for equal access to research, treatment and care continues. Plus, you can still donate to sponsor a bed, blanket, or pillow in honor of someone and the name will appear on our website–don’t miss out on this opportunity!
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A unanswered letter to the CMOH
With a lot being heard since 2020 about long haul covid, and long covid clinics opening up in various larger cities (with long waiting lists), patients with other post-viral illnesses are remaining left in the shadows. This despite clinical definitions and diagnostic criteria for post covid 19 long haul disease being clinically and practically the same as those for Myalgic encephalomyelitis/chronic fatigue syndrome. Including ME/CFS as a long haul disease and allowing ME patients to benefit from emerging Long COVID expertise at Long COVID clinics would be a start. Conversely, opening the discussion between those scrambling to find solutions for long haul COVID patients and those very few who have expertise in finding solutions to ease the suffering of ME patients would be highly advisable.
The letter below was shared with Alberta’s Chief Medical Officer of Health on August 26, 2020 once the first cases of post covid 19 long haul disease were being reported to the media. With no reply given and no actions taken at the time, they are now being shared here for widespread dissemination. The intent is that many voices will take up the cause on behalf of those patients who have for decades been living and still live in medical no man’s land so that finally their needs may be heard and met.
As the author of the letter to Dr. Hinshaw put it:
I am writing now as there is a reasonable solution at hand, as Long COVID patients are receiving care which could be extended to the currently-excluded Alberta patients with other post infectious long haul disease sometimes lasting decades.
Please note that the clinical definitions and diagnostic criteria for post covid 19 long haul disease, are clinically and practically the same as those for Myalgic encephalomyelitis/chronic fatigue syndrome. This guideline set was created in 2016, with me as the severely ill patient rep to the committee. However ME patients are still not seeing any increase or improvement in care. https://actt.albertadoctors.org/media/122e14l3/mecfs-cpg.pdf & https://actt.albertadoctors.org/media/gemndsyj/mecfs-summary.pdf
Requests for action in this paper written to the past CMOH were based on longstanding unmet healthcare, social and practical needs identified by several decades of the Canadian community health survey, Alberta Health Quality Index, and other indices as well as widespread personal and experiential reports among Alberta patients as well as from Alberta doctors not sufficiently supported or given the professional resources and tools to care for ME patients. (Read: they need directed, adequate funding).
https://cpsa.ca/news/guest-column-the-orphan-patients/
Alberta doctors’ piecemeal body part by body part billing codes need to be upgraded to reflect the whole patient, the complexity and also the decades of lack of care ME/CFS patients have received. The system is highly ineffective and causes wasted healthcare time dollars and patient time as well as shattered hope and misunderstandings. The bottom line is, if you asked the wrong questions because you are funded to ask the wrong questions, everybody pays, and the patients just suffer indignity atop systemic ignorance. There are more patients in Alberta with ME than with MS and the incidence of ME is higher than breast and lung cancer. Debility and cost to society are detailed in this Ontario government link: https://www.ontario.ca/page/final-report-task-force-environmental-health. Ontario has made some strides in governmental discussions about needed care and policy, and has more stats to refer to, but the same situation exists for ME patients nation wide.
There need to be a wide range of doctors and other care providers willing, knowledge-ready and -able to provide MCS and ME/CFS care, and there are certainly none in Edmonton area at all, much less any taking patients, and I still know of just one, part time, in Calgary. She has been trying for decades to increase the number of practitioners interested in and willing to care for these patients but there is no apparent significant improvement in Dr. availability.
I can barely read any more, and I have trouble attending my own medical appointments. I can’t even organize and train sufficient home help and enough care to get through a week without struggling to the point of being overwhelmed by the rigours of severe ME and multiple chemical sensitivities (MCS is common in ME and long covid, for a large percentage, and is also in clinical no man’s land).
Yet the Development and availability of Directed specific long covid/ME treatment could turn the last 5, 10 or 20 years remaining in my life from stressful drudgery into productive joyous years. My family and friends are also terribly adversely affected by my disabilities and needs. If I could just be included in care. If I could get access. If My illness were put on the map as it should be, like a long Covid patient. It makes no sense that their lives should matter and mine should not just because I got H2N3 in 1990 or Epstein Barr Virus like two of my ME/CFS contacts did, and did not recover normally, still suffering viral damage. Just Not from Covid.
August 26, 2020
Dr. Deena Hinshaw
Chief Medical Officer of Health
Dear Dr. Hinshaw,
We are writing to present what we believe to be an important Post-COVID-19 public health matter, apparently not yet on the public health radar. This document explains our position. First, we are requesting a Ministerial or CMOH Order that confers both Post-COVID 19 ME (Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome), and all post infectious ME/CFS with the status of “notifiable disease”. For Post-COVID 19 ME, this would in effect be extending the existing designation of COVID 19 as notifiable. We have noted the recommended practices for the reporting of (COVID 19) MIS-C as a notifiable disease, and explain below, the justification for the notifiable status and practices for Post-COVID ME/CFS and henceforth all forms of post-infectious ME/CFS.
In all the pandemic related news coverage in this province, this one fact has not yet been sufficiently stressed: Just as anyone can be a potential COVID-19 patient, anyone who has apparently recovered from COVID-19 but is still showing debilitating systemic symptoms, is now a potential ME/CFS patient (Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome).
…
Since the recovery rate for ME/CFS is only 5%, and this usually means pediatric or adolescent cases, it usually results in devastating lifelong disability. See De Paul University’s Dr. Leonard Jason on the prognosis for recovery and the cost to patients and society. Making recommendations to the Federal Minister of Health in 2008, the Myalgic Encephalomyelitis Association of Ontario calculated the costs of ME to society in Canada.
As we had anticipated, COVID-19 patients who thought they were healed, are now coming forward with symptoms of ME, disturbingly also reporting that they are being denied adequate care and compassion, much in the same way that Canadians with ME report.
…
We ask you to use the notifiable designation for the first ever Alberta Health/Health Services management and surveillance of existing ME and Post-COVID ME in the Alberta population. To start, we ask that you:
Immediately warn the public including the “longhaulers” via television and all
other means about the potential for COVID to become ME - with reference to the
clinical picture based on 2016 TOP guidelines for ME in Alberta. This can give them a framework from which they and their physicians can interpret their new post-COVID symptoms.
Provide communication to the medical and healthcare professional colleges and
the healthcare community at large about this emerging public health threat (post
COVID ME). All Alberta doctors and specialists should be made aware of -- and
instructed how to report - new and existing cases, perhaps via ministerial order.
Partner with Alberta professional and community ME/CFS- knowledgeable
stakeholders with a view to forming a Strategic Clinical Network (SCN) if
momentum and capacity can be achieved. We have noted your role on several
committees and the Population, Public & Indigenous Health Strategic Clinical
Network. Could we have your input about the potential formation of an SCN for
ME?
Monitoring and reporting is already occurring in Alberta for other diseases associated with COVID 19 and post COVID, such as Guillain-Barre syndrome, MIS-C, and adverse outcomes such as lung and heart damage. We are concerned about the lack of existing infrastructure and capacity for reporting of ME cases. Epidemiological studies on ME/CFS have never been done in Alberta before.
The only existing survey in Canada which names CFS specifically in a survey of the status of chronic diseases, remains the Canadian Community Health Survey. It shows that from among 25 chronic diseases ME/CFS patients have had the greatest unmet needs in all categories including clinical care and home help for at least the past 20 years.
Pre-COVID, ME/CFS already affects an estimated 600,000 Canadians (https://cihr-irsc.gc.ca/e/51885.html. See xi.) Mathematically speaking, 50,000 plus of these would be Albertans. Countless testimonies and reports of the lived experiences of Albertans with ME have been summarized by Calgarian Valerie Free and personally reported by severely ill Albertans over decades. The number of new ME patients has the potential to be significant and the health care system in this province is not at all prepared.
Cautionary notes from the field
In the article entitled “The Orphan Patients” appearing in the College of Physicians and Surgeons of Alberta Newsletter, The Messenger, Nov 2019, recently retired Edmonton internist Arnold Voth raises a red flag about Alberta family doctors avoiding taking ME/CFS patients onto their caseloads. There is also a lingering issue of physicians and specialists confusing ME/CFS with Fibromyalgia (which often overlaps or is comorbid), as well as with PTSD or depression without regard for the distinctions carefully laid out in multiple ME/CFS clinical practice guidelines and numerous diagnostic algorithms (as seen on page 10 of this clinicians’ guide)
There is the problem of confusing Fibromyalgia and ME at peril to the patient, due to opposite management protocols (i.e. aerobic exercise helps FM but the aerobic pathways are impaired in ME/CFS). Even when patients are diagnosed correctly with ME, scientifically discredited treatments such as intensive or graded exercise put them in danger of permanent relapse. Post exertional relapse (cytokine cascades) is a hallmark of ME/CFS, and ignoring this fact can result in permanent harm to the patient.
In addition, long term ME/CFS cases are frequently treated like new cases, without regard for the painstaking diagnostic cycles patients have already undergone, sometimes over decades, to prove disability and try to get adequate management advice. Crucial for accurate diagnosis and meaningful support is a strong doctor patient relationship, yet due to doctors not allowing or not feeling they can afford to allow sufficient time per patient, plus a range of attitudinal and other factors this relationship is often strained and unfortunately often terminated. Desperate ME patients often end up paying privately for homeopaths, naturopaths and other alternative and complementary medicine providers whose treatments have not been rigorously tested – or tested at all. Albertans with ME need, want, deserve and should be entitled to universal healthcare, ME-knowledgeable long-term family doctor support, and disability accommodation for their disease but this is not happening.
We believe that a Ministerial Order calling for surveillance and notifiable status for all forms of ME would create a fulcrum for needed healthcare change because it will encourage doctors and specialists who may previously have been disengaged, antagonistic or frustrated about ME care, to recognize the legitimate status of this disease and its long suffering patients. All those doing clinical care should appreciate being supplied with epidemiological ME data and the resulting funding from the Alberta government to support their proposals for ME care, both in person and via Telehealth for the homebound ME patients. In this way the designation as a notifiable disease can pave the way for more healthcare professionals to show active interest in ME and make it their area of special interest and expertise.
We have other questions.
Could the Health Quality Council of Alberta be engaged to study ME care outcomes? Could they be engaged to collaborate with an ME specific SCN to create recommendations and change the unmet needs status quo? This is a long-term, usually lifelong disease (to emphasize, ME was defined as a disease in 2015 by the American Academy of Medicine independent scientific review body).
Could the Alberta Medical Association assist through some of their programs?
What would be the role of the AMA and the College of Physicians and Surgeons
of Alberta in the implementation of a ministerial order of this kind? What would
there be to prevent, as Dr Voth outlined the “orphaning” of Post- COVID-19 ME
patients?
How, for example would the designation as a notifiable disease impact the
training of staff and reporting of the various advice lines (such as Health Link and
the Rehabilitation Advice Line?) Would the phone support personnel be
empowered and encouraged to use the 2016 TOP Alberta Guidelines to help
identify cases of ME/Post-COVID 19 ME?
Do you see potential for the Alberta Tomorrow Project, which is a long term
survey of the Alberta population re cancer and recently, chronic disease, to play a
role in what we are asking for given a potential connection between certain forms
of cancer and ME/CFS? Could they add questions to future surveys about all
POST COVID 19 conditions including ME/CFS? Could they add questions about
ME/CFS in general? How might that work? Could the ministry direct them to do
this?
Stakeholder Inclusion
Progress via studies, reporting and improved care, as well as eventual clinics down the road, must be done in consultation with the ME patients and caregivers as stakeholders.
One cannot underestimate the need for (pardon borrowing this terminology from another tragic and important Canadian failure of trust) truth and reconciliation. In this case of failed healthcare, it is truth, trust, reconciliation and repatriation of these beleaguered patients into a welcoming, knowledgeable and ME- accessible healthcare system.
Alberta ME and post COVID ME research
In the words of Dr. Nancy Klimas of the Institute for Neuro-immune Medicine at Nova Southeastern University (Florida), COVID-19 provides a “sad opportunity” for a whole new contingent of potential subjects for ME/CFS research arising out of the current wave of people “recovering” from COVID-19. As we are beginning to see, this would also include COVID patients who are showing many symptoms of ME/CFS and whose COVID test results are now coming back negative. In September 2019, a new CIHR Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network was founded. We also note that COVID funding is a high federal priority. ME Patients are depending on the gatekeepers to the medical and healthcare system for hope, health support and the opportunity to take part in clinical trials of promising treatments such as have been tried on subgroups of ME patients at Stanford University CFS Initiative, and in the Norwegian study of Rituximab as a potential treatment. If trials of treatments like these were conducted on Alberta soil, and Alberta patients had access to the opportunities they afford, the status of unmet needs of ME patients would begin to turn around.
We urge Alberta Health, AHS and Alberta Innovates to:
ensure ME population surveillance and other epidemiological research for those
with ME pre-COVID, and those who developed Post-COVID ME, i.e. the “longhaulers”
create (and fund) novel ME and post COVID 19 ME and other biomedical ME
research projects
ensure immunological and other biomedical ME and Post-COVID ME
research is integrated into decision making about these issues
together with a growing number of evidence-informed clinicians, found and
commit long term support to two post-infectious diseases research and care
clinics (one each in Edmonton and in Calgary with outreach to smaller centres)
These should be funded, operated and maintained and would be a much needed
first in Alberta. Swedish research points to specialist clinics being best placed to
assist with diagnosis, management and care of patients with ME while society
waits for ME specific medical treatment to be available.
ME-specific Care and Supports needed
While patients with ME often also have Fibromyalgia and multiple chemical sensitivities, and, it is important that these also be treated, what ME patients want to see halted is the tendency for specialists to send ME patients on a wild goose chase.
A Quebec based rehabilitation medicine self managed care needs assessment was done in 2014 in collaboration with the Quebec government… This is the sort of self managed care program we could examine and emulate here in Alberta. We ask that you approach Alberta Health and AHS to take a leadership role to assist in integrating the unmet needs of patients with the multiple potential pathways to change.
Disability Accommodation in Care
Currently, even chronic care appointments are rushed, doctors are not informed, ME patients are cognitively, physically and subsequently often emotionally fragile during appointments. Doctors are even disbelieving of the devastating but non-visible functional effects of some of the symptoms such as pain, nausea, faintness, etc., such hope and support are all too often absent. What can you propose to change this status quo?
It is of great benefit that Virtual Care/Telehealth has widely been implemented in Alberta. This has the potential to serve the most severely ill with ME, who have great difficulty attending appointments. After-hours availability of medical support could be facilitated through Telehealth for ME patients dealing with circadian rhythm disorders and thus prevented from participating in daytime telehealth appointments. Complex care codes need to be continued (and sufficiently funded) to include the sickest who struggle to communicate at all, and remain housebound or bed bound for years. As well, a phone in line could be set up for those so severely ill with ME seeking information, as such patients often do not have access to or the ability to deal with information on the internet.
In Summary
We are asking you as the leader of our provincial public health officials responsible for dealing with the COVID crisis from top to bottom, to attend to our petition, give voice and leadership to what we are presenting; to help drive an awareness of the gravity of the potential of a Post-COVID ME health crisis; to take advantage of this ripe opportunity for first time and real-time longitudinal studies of the evolution of non-recovered cases into ME/CFS; and to inform public, medical and government attitudes regarding ME/CFS in general.
We ask that we may be included as informed stakeholders with lived experience and included in follow up communications for any resulting projects, studies or plans.
Sincerely….
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Reference material that was drawn upon for the writing of this letter included a report a report prepared by the European ME Network as seen in the Winter 2020 issue of the Newsletter of the National ME/FM Action Network:
The report recommends 2 to 4 ME specialists per million population. The specialists would have “a supporting multi-disciplinary team” which could include “nurses, nurse practitioners, occupational therapists, psychologists, dieticians, social workers etc.” The report ends by noting that the following sectors need to be involved in discussion establishing and supporting ME health services: • the health sector (to develop and evaluate services and to adopt guidelines) • the public health sector (to raise awareness) • the higher education sector (to provide training) • the education sector (so they know how to accommodate students with ME) • the employment sector (so they know how to accommodate employees with ME) • funding agencies and the pharma industry
http://www.mefmaction.com/images/stories/quest_newsletters/Quest126.pdf (p.2.)
Note that even prior to COVID, Alberta has had nowhere near this level of specialists/supporting teams. Obviously with the addition of Long COVID patients to the mix, the ratio recommended here will need to be significantly increased.
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Let us put an end to this needless suffering, for once and for all!
Let’s stop this war and stop orphaning our fellow Canadians. Let’s step up to change awareness in the population as for far too long these patients have been told it is “all in their heads” and that their cases are too complex to be dealt with in a single appointment, or that they should kindly be referred to someone else.
Enough is enough!
(PS: To request a copy of the complete letter, including all the references cited, please contact followingthecovidscience@gmail.com.)
Parking links to potentially useful studies here https://www.sciencedirect.com/science/article/pii/S2666354623001345 as a reminder to self to look at them sometime.