[POLL] Is ME primarily an environmental illness?

@Milo why don't you put the word "primarily" in the thread title and poll question? I know it's there in your first post, but it seems central to the question you are asking and some may vote before reading that post.

 

Will do, thanks. (I could not change the poll question though)

 

While I agree with you some, I was referring to services who took care of the particular diseases.

Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis

Gynecology is the medical specialty that cares for women with endometriosis.

So should environmental medicine care for patients with ME and claim this is an environmental illness or as they also mention ‘environmentally-linked illness?

Is it necessary to further stigmatize our disease this way?

 

I am not sure hat environmental medicine cares for anyone. As far as I know environmental medicine departments are mostly involved with public health measures designed to protect everyone.

I don't actually think this is what 'environmental illness' means to anyone medical.

Usually when there is talk of environmental illness it is about radiation or mobile phone masts and suchlike. I see no reason to think they have anything to do with ME.

 

I appreciate your comments @Jonathan Edwards . I am asking because there is an ’Environmental illness task force’ report circulating right now for patients to comment to, in the light of the upcoming Montreal conference. This Ontario based task force is advising the government on ‘environmentally-linked’ illnesses which include ME, FM and MCS. Moreover the only clinic focusing on ME, FM and MCS in Ontario is called ‘Environmental health clinic’.

I question the usefullness of rebranding 3 diseases and packaging them as ‘environmental illnesses’. On the pther side of the country, we have British Columbia rebranding ME, FM and chronic lyme diseases as ‘Central sensitization Syndrome’.

In my opinion, both types of rebranding are useless and stigmatize patients further into different labels that are unhelpful in bringing new talent, new funding, and more physicians into the field.

But they get ‘A’ for creativity

 

Then I agree. An environmental clinic specialising in ME and fibromyalgia sounds like a scam. If it is a government run scam something seriously weird seems to be going on.

Edit: it does seem to a government run scam. They educate people about diseases that have nothing to do with the environment. I presume people high up think that this sort of thing will keep those silly annoying women happy.

 

IMO ME is only an environmental illness in sense that the people with it generally require an environment in which to exist, but then so do the majority of other people with any illness. Using much the same logic, people without heads rarely suffer from psychiatric complaints, or if they do they rarely complain about them.

 

No

 

This ‘scam’ have been going on for decades and is the reason why there has been no progress in Canada in a very long time. ‘Parking’ full diseases into a shady, unfunded corner of medicine would do that. It is very shameful.

 

CSS, MUS, MUPS, etc. are all attempts to bury ME in new ways. The dangerous part is that they're gaining ground.

We have the ICCS in Nova Scotia pushing the CSS agenda now as well and physicians in Newfoundland consulting with CSS proponents. We have government sites using MUS, MUPS and I think I've even seen SEID recently on one of them.

I personally don't believe ME is an environmental illness, yet can't deny that environmental causes seem to be a trigger for many. Since becoming ill with ME, my own symptoms are exacerbated with exposure to fragrances, toxins, etc.

Setting aside the debate for a moment and the history of how it ended up in Ontario becoming part of the Task Force on Environmental Health, and looking solely at the Interim Report itself, it contains many beneficial recommendations.

Getting the Ontario government to adopt these recommendations as soon as possible, would offer concrete benefit to our community as well as the FM and ES/MCS communities, while the politics of it could be sorted out later. It would also set a precedent for other provinces to follow.

Here are some of the highlights contained in the report:


Time for Leadership: Recognizing and Improving Care for those with ME/CFS, FM and ES/MCS
Task Force on Environmental Health
Phase 1 Report
July 2017


From the Opening:

The task force spent its first few months developing a shared understanding of the current state of evidence and research on ME/CFS, FM and ES/MCS, as well as the current state of care, health provider education and general awareness about these environmentally linked conditions. We found that, throughout the health care system and in society at large, there is:

• 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.



From the Introduction:

More than 550,000 Ontarians – or approximately five of every 100 people (age 12 and older)(1) in the province – live with one or more of three chronic debilitating conditions that may be triggered by environmental factors: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia (FM) and/or environmental sensitivities/multiple chemical sensitivity (ES/MCS). That is almost nine times the number with Alzheimer’s disease. (2)

Despite the large number of Ontarians of all ages affected by these conditions, they have received little attention. As a result:

• the pathophysiological mechanisms that cause these conditions have not yet been identified
• the three conditions are extremely difficult to diagnose, treat and manage
• the people affected by these debilitating conditions experience stigma and discrimination in their efforts to find care and treatment.

In May 2016, to help improve knowledge, care and health outcomes for people living with ME/CFS, FM and/or ES/MCS the Minister of Health and Long-Term Care established the Task Force on Environmental Health (task force).



From the Executive Summary:

The Task Force on Environment Health was established by the Ministry of Health and Long-Term Care to provide advice on how to overcome these gaps in knowledge, care and attitudes. In the first year of its three-year mandate, this group of expert clinicians, patients, researchers, advocates and representatives from health system organizations has identified a number of early concrete steps can be taken now to establish the foundation for an effective, patient-centred system of care.


1. Change the conversation and increase understanding and recognition of these conditions

Recommendation #1.1: Make a formal public statement recognizing ME/CFS, FM and ES/MCS
The task force recommends the Minister of Health and Long-Term Care make a statement recognizing ME/CFS, FM and ES/MCS, reinforcing the serious debilitating nature of these conditions, dispelling the misperception that they are psychological and making a commitment to improve care, education and support for caregivers.

Recommendation #1.2: Establish academic chairs focused on ME/CFS, FM and ES/MCS
The task force recommends that the Ministry of Health and Long-Term Care (ministry) fund academic chair positions in clinical environmental health focused specifically on ME/CFS, FM and ES/MCS.

Recommendation #1.3: Modernize the K037 fee code to include all three conditions
The task force recommends that the ministry re-initiate the process to 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. Develop a common understanding of ME/CFS, FM and ES/MCS

Recommendation #2.1: Develop clinical case definitions and clinical practice guidelines to support standardized, high-quality, patient-centred care.
The task force recommends that the ministry establish an expert panel to reach consensus on clinical case definitions and clinical practice guidelines for each of the three conditions. ​

3. Lay the groundwork for a patient-centred system of care

Recommendation #3.1: Establish detailed clinical care pathways to support the development of an evidence-based system of care.
The task force recommends that the ministry 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. ​

Recommendation #3.2: Make hospitals safe for people with ME/CFS, FM and ES/MCS
The task force recommends that the ministry 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.​

Recommendation #3.3: Make long-term care homes safe for people with ME/CFS, FM and ES/MCS.
The task force recommends that the ministry 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. Increase the number of knowledgeable providers

Recommendation #4.1: Continue to fund the Enhanced Skills Program for 3rd Year Residents in Clinical Environmental Health.
The task force recommends that the ministry continue to fund this program until the task force makes further recommendations for advanced education specializing in ME/CFS, FM and ES/MCS. ​

 

The recommendations of the report are good but the persistance of calling ME an environmentally -linked illness or environmental illness is wrong, stigmatizing and harmful. There is no need to segregate these diseases in a label that doesn’t serve patients well.

Assuming that it is an environmental illness because you are allergic to perfume would be just like saying lung cancer is an environmental disease: It serves no purpose other than serving the agenda of the doctor who has an affinity for the terminology, or for the government who is committed to keep these diseases in the margins of medicine.

Dropping the environmental illness link would in my opinion make the task force report stronger because indeed it has soem good parts in it. Should this report becomes a national task force, i would hate to hear that what is taught in med schools that ME is an environmental illness (and Lyme disease isn’t)

 

Well we know that's not going to happen.
This has been the culmination of years of work and a new task force would have to be set up for that.

Since it's a done deal at this point, the primary question as I see it really is:

Do we not get behind this report and let all of these years of work go to waste, waiting for years more to go before any concrete action is taken on our behalf?
Or do we try to leverage this opportunity, (imperfect as it is), push to have it enacted to immediately benefit the community and squabble about their classification later?

 

Stop the harm! Stop the stigma! Canadians should not accept to have ME and FM in another stigmatizing prison that is hard to get out of. They need to get it riht from the get go. For all the years the Environmental clinic has existed, absolutely no progress has been made. Patients are still neglected and there are still no treatments.

It is essential to get it right from the start. Oh and look at the poll results.

 

'Is ME an environmental illness?'

For me it is one of many triggers so I didn't vote.

 

The question though is not ‘is Me triggered by the environment’, it’s Is ME and environmental illness.

 

Sorry

 

I didn't vote either but I believe strongly that environmental triggers are one (of many) causes of ME in some cases. Environmental medicine is legitimate (at least in the US) and the mold doctor that I saw in 2015 was phenomenal. She helped us with all aspects of dealing with recovery from toxic black mold (medical & clinical, dealing with our physical belongings, legal advice, etc). She was a God-send at the time and really knows her stuff. She had no agenda (and very different than the popular mold doctors that we often hear about who promote their own labs and products).

 

However mold illness is not ME.

 

I do not think ME is an environmental illness, but i do think environmental aspects can ve triggers.
It is a perfect storm where many elements/ processes have to be in place to constitute ME. Some may be genetic and / or epigenetic, but there is no single one thing that causes it IMO.
Organophosphates and pesticides may be part of the picture, as may mould. But the full picture is like a jigsaw - not fully appreciated until all the pieces are assembled.

 

I am rather sceptical. What exactly are the years of hard work? As far as I can see the material in the report is obvious - anyone could say it. And I see no reason to think it will lead to any concrete action since people have been saying it for years.

I doubt there is any opportunity to 'leverage'. It looks to me that some environmental health people are making a bid for more jobs for their people. The suggestion that 5% of the population have these illnesses is implausible. To my mind this report is bad publicity for PWME because it will look badly thought out to the authorities. It would play into the idea that ME advocacy is flaky stuff. I would give it a wide berth. It looks like the same politicking as the PACE trial did with AfME - sounding sympathetic while having another agenda.