Long COVID patients already struggle to access SSI. Now, Trump's Medicaid work requirements could see chronically ill and disabled people without documentation lose coverage
Sadly, the only recognized test by SSDI to prove myalgic encephalomyelitis caused by long covid is a 2 day cardiopulmonary exercise test. It is $3000 out of pocket and causes serious post exertional malaise (PEM). Mine lasted 4 weeks after the test. Only people who can afford it, have access to it (limited places offer it), and are willing to damage their body will get the documentation they need to prove their condition. It’s another injustice for us.
This is so scary . I’m so afraid of getting permanently worse from triggering PEM since I only became homebound 7 months into long COVID after beginning to go on daily walks again
The fact that I had to do it is shitty, but there are upsides to the test. For the first time, I had a test to prove and validate my symptoms. I know longer waffle if this is in my mind. It was very freeing. I took it to every doctor & had them comment on it in my medical records. The place I went, Workwell Foundation, wrote the report so that it broke down how many energy units I’m typically allotted in a day, and then gave examples of on average how much a shower takes, making your bed, eating breakfast, 20 minutes on a computer, etc. I basically would maximize my daily allotment before leaving for work. I now had a way to explain my disability backed by my data, not just an article in the spoon theory. So many of the work ups, labs, gaslighting by doctors, & testing led to PEM. At least this time I was in control, got something out of it, and was able to prepare my family for it.
Exactly. Mine was about $4k, after travel, lodging, and food were added to the test cost. And it went on a credit card. I’m privileged to have had that much available credit, but it’s still not paid off three years later.
You are right! I didn’t include travel, lodging and my husband missing work so he could take me and literally help me walk to the car. Pro tip- take a wheelchair. I wish I took one.
I got my SSDI for ME/CFS in the US back in the 90s based on a neuropsychiatric exam documenting cognitive problems from the damn disease. I always push this as an alternative to exercise tests.
The doctor contracted by the SSA to examine me for my long COVID-related SSDI case spent a total of three minutes with me, no exaggeration. When my husband wheeled me into the room in my mobility chair, the doctor turned, looked at me, and said, “you’re a little young to be in that thing, aren’t you?” It was, start to finish, the most humiliating medical experience of my then 48 years of life.
I’m so sorry , that’s awful. I wrote in another piece about my first experience asking for a wheelchair at a hospital when I realized my doctors office was across the building and I wouldn’t be able to work. The receptionist first lied to me and told me they didn’t have any wheelchairs WHILE another employee grabbed me a wheelchair from RIGHT behind her, then she tried to question me whether I rly needed it :/
Idk why in this day and age it’s such a mysterious concept to ppl that not everyone who needs a wheelchair looks one particular way
Ed Yong's reporting about long Covid taught him that "as energy-depleting illnesses that disproportionately affect women, long Covid and M.E./C.F.S. are easily belittled by a sexist society that trivializes women’s pain, and a capitalist one that values people according to their productivity." Your research and writing here on the barriers to adequate care in this country for long Covid sufferers bears that out.
I think it’s way past time that we start calling the American regime genocidal. Not only because it is rounding up people into concentration camps in this country and abroad, but because the sort of foundational logic driving policies is that only “healthy, productive, working” people deserve to live. Everyone else is marginal or disposable. It’s horrific and sickening, and needs to be called out!
Great post from Doubledown. I have something to say about it as well, from personal experience. This is a slight rework of a comment I have already left after restacking it.
The techniques of cutting people off medical aid are always start out the same. Slander the old and ill. Claim people are faking illnesses to get out of “work”.
I remember being subjected to this crap in Alberta way back in the 1980s. My home province seems to be the place where the neoliberals test out their ideas. What they do there turns up in other jurisdictions later.
In that time and place, people cut off from medical care there tended to go to other provinces, especially British Columbia. The governments of these provinces, and the federal government, quickly got impatient with that. I believe the behaviour of the Alberta government at that time incentivized the federal government passing the Canada Health Act. 1984.
CHA made it clear there was a right to health care. It was a great help to people like me, forced into the very disturbing situation of having to prove we have an illness. As Doubledown notes, the people with the tests and equipment to prove it are the ones trying to drive you away.
When this stopped working, the screw heads then started ‘delisting’ services. They tended eventually to be forced to start paying for them again. Medical associations became more progressive over time and learned they had no choice but to protect critical services.
Also, to protect doctors from harassment from ‘efficiency expert’ types. Medical associations can have a lot of power when they use it.
The next trick is always to try quietly removing funding. The screw heads have been trying to dismantle medicare in Canada for forty years. It is still standing. Trump is after the more limited “Medicaid” in the USA. The advantage he has is that, down there, the recipients who are cut off have nowhere to go.
Cutting medicare is not about saving money. It is an ideological thing. Public medical services are ‘socialism’. That is always a big red flag waved at the mad bulls.
The only way they can really destroy public health care is to privatize it. That is a big cash in for investors looking to create private services and insurance. It does not save neoliberal governments money, it increases costs.
The present government in my province of residence is trying to privatize the medical system and damn the cost. They use some dishonest bookkeeping to conceal how they take the money out of the public budget, and use it to subsidize private clinics, temp nursing agencies, and so on.
The timing of this is wonderful. I have been hit with a serious illness. My doctors are having a hard time figuring out just what the problem is. The big problem is that the tests they need are now harder to get booked.
They are all still there. They are free if you do not die waiting for them. The waiting times are so long because of the staffing shortages, and because ‘private clinics’ are hogging the publicly funded facilities.
One thing I do not have to endure again is the “malinger” slander thrown at me. That really does not go over in Canada. Even the screwheads back in Alberta, who originated it, know enough these days not to use this type of language.
My doctors are doing a good job for me in very difficult conditions. I should have answers by September. I am prepared for the possibility that they may not be happy answers.
At least I will know what it is that has hit me so hard. It does not seem to be covid related.
However, if I was American I would never be able to afford all these tests. I am pretty sure I would just be told to go off somewhere and die.
Thank you for the very informative article, Double Down Day.
This reminds me of the rules placed on abortions, and how it affects women in all sorts of situations. That's the whole point: control of women's bodies. In this case, the whole point is to make American even more cruel and harsh. It's to show no mercy to anyone harmed by this rotten system. It shows once again that Democrats aren't an opposition party. We need an alternative who is willing to fight for the working class, including for public health and those with long COVID. I have seen evidence the Green Party is that party since Jill Stein spent time pandering to anti-vaxxers who are part of that base they're trying to attract. That said, it's a small party and if people who value public health entered in, they could maybe change the focus and improve things. Also, Stein is just one person. She's not the party. We also need better and stronger grassroots activism. Nothing will change on its own. People have to fight for it.
Sadly, the only recognized test by SSDI to prove myalgic encephalomyelitis caused by long covid is a 2 day cardiopulmonary exercise test. It is $3000 out of pocket and causes serious post exertional malaise (PEM). Mine lasted 4 weeks after the test. Only people who can afford it, have access to it (limited places offer it), and are willing to damage their body will get the documentation they need to prove their condition. It’s another injustice for us.
This is so scary . I’m so afraid of getting permanently worse from triggering PEM since I only became homebound 7 months into long COVID after beginning to go on daily walks again
The fact that I had to do it is shitty, but there are upsides to the test. For the first time, I had a test to prove and validate my symptoms. I know longer waffle if this is in my mind. It was very freeing. I took it to every doctor & had them comment on it in my medical records. The place I went, Workwell Foundation, wrote the report so that it broke down how many energy units I’m typically allotted in a day, and then gave examples of on average how much a shower takes, making your bed, eating breakfast, 20 minutes on a computer, etc. I basically would maximize my daily allotment before leaving for work. I now had a way to explain my disability backed by my data, not just an article in the spoon theory. So many of the work ups, labs, gaslighting by doctors, & testing led to PEM. At least this time I was in control, got something out of it, and was able to prepare my family for it.
Exactly. Mine was about $4k, after travel, lodging, and food were added to the test cost. And it went on a credit card. I’m privileged to have had that much available credit, but it’s still not paid off three years later.
You are right! I didn’t include travel, lodging and my husband missing work so he could take me and literally help me walk to the car. Pro tip- take a wheelchair. I wish I took one.
The place I went (Ithaca College in upstate NY) wheeled me in and out. I didn’t particularly need it, but they insisted ☺️.
I got my SSDI for ME/CFS in the US back in the 90s based on a neuropsychiatric exam documenting cognitive problems from the damn disease. I always push this as an alternative to exercise tests.
The doctor contracted by the SSA to examine me for my long COVID-related SSDI case spent a total of three minutes with me, no exaggeration. When my husband wheeled me into the room in my mobility chair, the doctor turned, looked at me, and said, “you’re a little young to be in that thing, aren’t you?” It was, start to finish, the most humiliating medical experience of my then 48 years of life.
I’m so sorry , that’s awful. I wrote in another piece about my first experience asking for a wheelchair at a hospital when I realized my doctors office was across the building and I wouldn’t be able to work. The receptionist first lied to me and told me they didn’t have any wheelchairs WHILE another employee grabbed me a wheelchair from RIGHT behind her, then she tried to question me whether I rly needed it :/
Idk why in this day and age it’s such a mysterious concept to ppl that not everyone who needs a wheelchair looks one particular way
Ed Yong's reporting about long Covid taught him that "as energy-depleting illnesses that disproportionately affect women, long Covid and M.E./C.F.S. are easily belittled by a sexist society that trivializes women’s pain, and a capitalist one that values people according to their productivity." Your research and writing here on the barriers to adequate care in this country for long Covid sufferers bears that out.
I think it’s way past time that we start calling the American regime genocidal. Not only because it is rounding up people into concentration camps in this country and abroad, but because the sort of foundational logic driving policies is that only “healthy, productive, working” people deserve to live. Everyone else is marginal or disposable. It’s horrific and sickening, and needs to be called out!
It's so disheartening to see the level of societal selfishness applied to the most vulnerable. Thank you for continuing to shine the light on it.
Great post from Doubledown. I have something to say about it as well, from personal experience. This is a slight rework of a comment I have already left after restacking it.
The techniques of cutting people off medical aid are always start out the same. Slander the old and ill. Claim people are faking illnesses to get out of “work”.
I remember being subjected to this crap in Alberta way back in the 1980s. My home province seems to be the place where the neoliberals test out their ideas. What they do there turns up in other jurisdictions later.
In that time and place, people cut off from medical care there tended to go to other provinces, especially British Columbia. The governments of these provinces, and the federal government, quickly got impatient with that. I believe the behaviour of the Alberta government at that time incentivized the federal government passing the Canada Health Act. 1984.
CHA made it clear there was a right to health care. It was a great help to people like me, forced into the very disturbing situation of having to prove we have an illness. As Doubledown notes, the people with the tests and equipment to prove it are the ones trying to drive you away.
When this stopped working, the screw heads then started ‘delisting’ services. They tended eventually to be forced to start paying for them again. Medical associations became more progressive over time and learned they had no choice but to protect critical services.
Also, to protect doctors from harassment from ‘efficiency expert’ types. Medical associations can have a lot of power when they use it.
The next trick is always to try quietly removing funding. The screw heads have been trying to dismantle medicare in Canada for forty years. It is still standing. Trump is after the more limited “Medicaid” in the USA. The advantage he has is that, down there, the recipients who are cut off have nowhere to go.
Cutting medicare is not about saving money. It is an ideological thing. Public medical services are ‘socialism’. That is always a big red flag waved at the mad bulls.
The only way they can really destroy public health care is to privatize it. That is a big cash in for investors looking to create private services and insurance. It does not save neoliberal governments money, it increases costs.
The present government in my province of residence is trying to privatize the medical system and damn the cost. They use some dishonest bookkeeping to conceal how they take the money out of the public budget, and use it to subsidize private clinics, temp nursing agencies, and so on.
The timing of this is wonderful. I have been hit with a serious illness. My doctors are having a hard time figuring out just what the problem is. The big problem is that the tests they need are now harder to get booked.
They are all still there. They are free if you do not die waiting for them. The waiting times are so long because of the staffing shortages, and because ‘private clinics’ are hogging the publicly funded facilities.
One thing I do not have to endure again is the “malinger” slander thrown at me. That really does not go over in Canada. Even the screwheads back in Alberta, who originated it, know enough these days not to use this type of language.
My doctors are doing a good job for me in very difficult conditions. I should have answers by September. I am prepared for the possibility that they may not be happy answers.
At least I will know what it is that has hit me so hard. It does not seem to be covid related.
However, if I was American I would never be able to afford all these tests. I am pretty sure I would just be told to go off somewhere and die.
Thank you for the very informative article, Double Down Day.
This reminds me of the rules placed on abortions, and how it affects women in all sorts of situations. That's the whole point: control of women's bodies. In this case, the whole point is to make American even more cruel and harsh. It's to show no mercy to anyone harmed by this rotten system. It shows once again that Democrats aren't an opposition party. We need an alternative who is willing to fight for the working class, including for public health and those with long COVID. I have seen evidence the Green Party is that party since Jill Stein spent time pandering to anti-vaxxers who are part of that base they're trying to attract. That said, it's a small party and if people who value public health entered in, they could maybe change the focus and improve things. Also, Stein is just one person. She's not the party. We also need better and stronger grassroots activism. Nothing will change on its own. People have to fight for it.