Urge your state health department to track myalgic encephalomyelitis/ chronic fatigue syndrome!
U.S. Call-to-Action: Please email your state health department and request they track ME/CFS (we have provided the email script for your convenience). A national conference will take place mid-April where states will decide which diseases to track as part of its Behavioral Risk Factor Surveillance System (BRFSS).
If government officials don’t track ME/CFS, how will they know that it is a problem!
Deadline to contact your state representative: March 31, 2018
Scroll to the bottom of the article for the email script and contact information for your state health department.
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Most ME/CFS advocacy in the United States has been targeted at federal entities like the National Institutes of Health, Congress, or the Centers for Disease Control and Prevention (CDC). Yet states also have a funding and a role to play in improving the care of patients.
For example, state public health departments can encourage local medical schools to include ME/CFS in their curriculums since many universities receive state funding. They can fund grants for local institutions to conduct ME/CFS research. They can provide resources and support for clinics targeted at certain groups. However, none of this is likely to happen if state governments do not perceive ME/CFS to be a significant issue. How can we change this situation? Make ME/CFS visible to state health department officials.
Every year, each state conducts a telephone-based survey of their residents. Thousands of residents are called up randomly and asked if they would like to participate. This survey is called the Behavioral Risk Factor Surveillance System (BRFSS) and consists of questions about residents’ demographics traits, health-related behaviors, use of medical services, and chronic medical conditions. States use data from the BRFSS to establish health objectives, plan health programs, implement disease-related programs, monitor trends and support legislation. With survey participants’ permission, states can crossmatch data from other databases and answer questions like how many ME/CFS patients are disabled, cannot afford adequate food or housing, etc.
For example, Illinois used data on smoking to pass legislation requiring non-smoking areas in public buildings while Delaware used breast cancer data to mandate that insurance companies include coverage of mammography. States also can aggregate their data together to examine national trends and compare how different states address issues.
How does this relate to ME/CFS?
In 2014, the US CDC designed and presented 2 questions to state health department officials at the national BRFSS meeting:
Have you ever been told by a doctor or other health professional that you had Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME)? (Yes/ No)
Do you still have Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME)? (Yes/ No)
These questions are simple but are a start to tracking ME/CFS. It is one way for us to exploit a program that states already are familiar with and using.
Unfortunately, 80 percent of states have to approve any proposed questions for them to be included in the core BRFSS. Not enough state health departments were in favor of these questions so the BRFSS did not include them or anything related to ME/CFS.
Individual states do have some leeway to add questions and a handful of states – such as North Carolina and Kansas – did include the questions for a year or two but this is not enough to generate good national data nor inform other states about how many people in their areas are affected by ME/CFS.
What can we, as patients and supporters, do?
The next national BRFSS conference takes place April 9-13, 2018, in Atlanta, Georgia.
State public health departments once again will attend the meeting and take a vote on what questions should be included.
Write your local state health department official and express to them that tracking
ME/CFS via the BRFSS is important to you. Preferably by March 31 so they receive notice early.
Some people believe that “if you can’t measure it, it doesn’t exist.” Let’s prove
them wrong!
Call-to-Action Instructions:
1. Find your State Health Department
Click here to find your state official responsible for the BRFSS.
If you live in the District of Columbia, Puerto Rico, US Virgin Islands, American Samoa, Palau, or Guam, the link also includes your region’s public health officer’s contact information.
2. Tell them the number of people affected in their state using this prevalence spreadsheet.
3. Email / Phone Script:
Here is a sample message you can modify/cut-and- paste into an e-mail (or convert into a phone script):
Dear [Name],
I am writing to you today about our state’s [or territory’s] annual Behavioral Risk Factor Surveillance System’s questions. I live in [your town, state] and am personally affected by myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). According to this National Academies report, there are an estimated XX[Insert using prevalence spreadsheet] people with ME/CFS living in the state of XX.
The US Centers for Disease Control and Prevention have designed 2 questions asking about ME/CFS for the BRFSS:
Have you ever been told by a doctor or other health professional that you had Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME)? (Yes/ No)
Do you still have Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME)? (Yes/ No)
Please consider supporting the addition of these questions to the Core BRFSS. Barring that, please consider adding them to our state’s [or territory’s] survey. Thank you for your attention,
[your name]
Contact your governor’s office:
You can also contact your state’s governor about this issue by clicking here.
12 thoughts on “Call-to-Action: Urge your State Health Department to Track ME!”
I literally just called my local, very rural, HHS, County Public Health Dept., in California. I was curious about tracking and services available for Autism, Alzheimer’s, Down Syndrome, Tick Borne Diseases (TBD). They don’t track the diseases. Only a local community group that assists with services for the diagnosed disabled & homeless, or the Rural Health Clinic do. Tracking doesn’t equate to reporting to the Public Health Department, which doesn’t equate to existence and therefore funding. The county, Mono or Inyo, doesn’t even think they have ticks that carry TBD’s, because they don’t have money for surveillance, how would they know. I can’t imagine how many places like this could even identify M.E.
I am writing a Letter to The Editor at a local paper about this very thing, Education, Identification, & potential Treatment for this spectrum of Brain Inflammation.
Thank you for all your efforts! You are changing, and saving lives, and maybe simple awareness can help prevent another generation from being born into this horrific situation.
SierraHealthAdvocate
This was my experience with rabies in Ohio. We had an obviously diseased raccoon chase my neighbor down while mowing the lawn and then into his house. The police came and shot it and took it away. When I called the county they said we don’t have rabies. I asked what did the test show from the raccoon that was brought in. She cheerily and naively chirped “oh we don’t test for rabies!” A year later they were dropping baits from planes and it had gotten to the point it was unignorable.
Our public health officials are not funded or educated on keeping the public safe in many ways.
That’s great, Liana! People often underestimate the impact of writing a letter or editorial in local papers but local politicians, businesses, and other influential people do read them and pay attention.
I had a great conversation with my health dept representative. I will follow up in June or July to file and be a part of the proposal process in Ohio. This is the process to get the questions voted on and included. This sounds like an easy process. She said it’s not political or based on money.
She was very generous with her time and was aware of ME/CFS but doesn’t have anyone in her personal sphere to relate to.
I always encourage people to educate themselves, since it is predicted that 90% of people aren’t diagnosed, and they surely want to be aware of this disabling and life stealing disease so they can be proactive.
If someone from MEAction is interested in being on the mailing list for being alerted when the proposals are being called for the contact info on the CDC website is accurate and I spoke with Justina.
Thanks Bazia for your efforts! Sometimes a personal touch goes a long way. Some health department employees work with data all day and don’t often come in contact with patients or their families. Our contact reminds them how vital their work is and how it touches the lives of people directly.
Given my encounters with people in online support groups, I wonder how many who have ‘chronic fatigue’ as a symptom of something else would simply answer yes to this question.
It also seems a lot of people don’t actually know if they are diagnosed with ME/CFS or not, some say yes because they assume it’s the same as chronic fatigue, others would say no but have all symptoms and may have been actually diagnosed but haven’t been told they do.
This is an aside to needed action, but I do wonder how it would play out on a survey type format, given all these factors. Would the estimates be significantly lower than they should be? Inflated? Accurate at all?
I guess that’s not necessarily the point, just to show the states we are there and need resources desperately.
Your “guess” is correct. The survey questions are a start to get states’ attention, even superficially. Once there are some numbers, then they might be compelled to fund further research to gauge the accuracy, impact, severity, etc. of the figures found.
A study where large, random numbers of people are screened by telephone, asked to come in to be examined by a doctor, and subjected to tests to arrive at a firm diagnosis of ME/CFS would be ideal. In the 3-decade history of ME/CFS in the US, this has only been done 3 times and the last time was something like 2 decades ago. Such studies require a lot of time, money, staff, and resources.
((There’s also a third group: people who have ME/CFS but their doctors don’t consider the diagnosis since they aren’t familiar with it or don’t believe in it. The community studies above suggest this third group might be quite large.)
Governments are unlikely to fund such work unless we continue to show them ME/CFS is a persistent problem that might affect quite a large number of people.
From Washington State–when I contacted our representative today she wrote back immediately and said she had heard from others drawing her attention to this proposal and that she had two friends who have had related challenges. She also said, “A number of topics have been proposed as additions to the survey. More information about each of these will be presented to the state coordinators at our national meeting in April.” I am encouraged by this level of interest in our state and appreciative of MEAction for facilitating advocacy throughout the nation. (I am now healthy, after losing many years to ME/CFS, but feel great concern for friends who are ill and people whose illness started more recently but are still facing the same struggles that we faced in 1988. Tracking, generating data and raising awareness in our state health departments is one step that may help.)
Thanks for reaching out Doreen to WA state’s public health department and for not forgetting patients who remain ill! We need healthy allies.
The email I got from the person in charge of this in MI was not encouraging. She said new questions rarely get enough votes to be added to the national survey, and organizations have to pay to add questions to the state one: “Proposals for state-added questions to the 2019 survey opened for review on March 22, 2018 and must be received by April 26, 2018….Programs requesting questions will be asked to contribute $2000 per questionnaire split for each question asked of less than 20% of respondents and $2500 per questionnaire split for all other questions.”
I don’t have that kind of money. I hope the process in other states doesn’t require payment. Keep trying, all!
Hi, Thanks for contacting your state health department! Yes, there is a process that all questions go through to get added or not to the BRFSS survey and it usually does take time, effort, and resources to get things added.
The point of this project was to make state health departments aware of ME/CFS — even superficially — and encourage them to vote for the questions at this year’s national BRFSS meeting. Like all projects, funding is required but that doesn’t come out of people’s pockets directly so don’t worry about paying for it personally!
Rather, as citizens, our main job is to make them understand why tracking ME/CFS is important and demand that we get an equal level of treatment as other medical conditions. After all, all of us pay taxes into state governments (whether it’s income, property, sales, etc.) so why should we not get equal consideration?
Don’t let them put you off by using lack of funds as an excuse. If you want, you could even contact your state legislative representative and ASK them to legislate for funds for the questions. States provide funds for tracking (and treating) cancer, heart disease, diabetes, etc. …..why should we be treated differently? Recognize state agencies and officials are not educated about this condition so we have to start somewhere.
Thanks again for reaching out!
I could be wrong but for decades ‘behaviour’ has been linked to health I’m told in the US. Patients with ME and previously other diseases have had this behavioural assumption turned against them by psychiatrists and psychologists. Blame is laid at the patients feet and is and has been used in the UK to deny medical treatment, welfare and many other forms of health care. This forces a gap, which allows Psychiatry connections to global companies, to fill with health insurance leading to drugs and therapies that have cost patients with ME and CFS etc to spend millions trying all alternatives without real success.
It is my concern that Patients are still taking the blame for all the products produced, with aggressive marketing and often advertised with added health benefits of low calories. It takes years to see the real negative effects on people, yet we get the blame!
Disease is not the patients fault. We do not actively seek unhealthy products or drugs. Therefore, Behaviour must be disconnected to health. It must be a secondary and separate issue, only, when a patient has been educated and been ‘fully informed” about the ingredients in products, what the technical names are and what they will do to our bodies.
We are not fully informed and we are not Chemist, researchers, nutritionists. You get the picture by now I’m sure.
Are we blaming sea life for eating plastic??
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