[trivial] Deary etc presentation @ Royal College of Physicians

[jimells]

Is he saying 20% of the UK population gets some form of disability payment based on Persistent Physical Symptoms?

Maybe they just mean "impairment", as opposed to "benefits payment".

 

[jimells]

GPs are constantly moaning about the 'worried well' who fill up their waiting rooms and they probably associate MUPs with that. Of course if it didn't take 10 visits to get a GP to do the most basic things then they would have to deal with less appointments,

The irony is that GPs are only set up to deal with well people. When a person is sick and calls the doctor, what do they say? "Go to the Emergency Room". They only want to see patients for lecturing about smoking and weight control, vaccines, scheduling colonoscopies, and prescribing cholesterol pills. Everybody else goes to the Emergency Room or a specialist (but only if the GP allows it ) .

 

[Aurator]

And yet I still have ME. I wonder how this crackpot explains that?

He probably smugly assumes that you've simply been unsuccessful so far in hoodwinking the authorities into giving you the help you're still shamming illness in the hope of eventually getting.

He would tell you that you shouldn't be ungrateful under the circumstances; your failure to secure any benefits is at least sparing you from falling into the vicious cycle that would be your undoing. As it is, you still have a chance of redemption, as long as you can learn to see things in the clear light of day (losing your home may help you in this) and you can come to understand that there are more worthwhile things to do with your time than persistently try to role-play your way towards a life of permanent social parasitism.

 

[SOC]

He probably smugly assumes that you've simply been unsuccessful so far in hoodwinking the authorities into giving you the help you're still shamming illness in the hope of eventually getting.

He would tell you that you shouldn't be ungrateful under the circumstances; your failure to secure any benefits is at least sparing you from falling into the vicious cycle that would be your undoing. As it is, you still have a chance of redemption, as long as you can learn to see things in the clear light of day (losing your home may help you in this) and you can come to understand that there are more worthwhile things to do with your time than persistently try to role-play your way towards a life of permanent social parasitism.

No doubt you are correct.

I still think the argument doesn't play out well in the US where social services are extremely limited. AFAIK, the only time US ME patients get social services is if we get disability payments... and that's very hard for PWME to do if what I hear at PR is correct. You have to have accepted, measurable disability that cannot be faked. You need data like CPET results that are accepted as legitimate measures of true disability for any number of conditions.

Can anyone in the US getting any type of social service for ME add to this discussion? Is anyone getting any social service beyond SS Disability payments... something like caregivers, shoppers, or other helpers? What evidence did you have to show to get those services? What is required to get SSDI? It's not just a matter of applying with sufficient proof, either. Don't you have to have been working shortly before you apply, so if you were sick a long time before applying or if you were a stay-at-home mom, you're not eligible for SSDI, right? There must be some other way for people in those circumstances not to be starving on the street. Some sort of poverty benefit?

Meanwhile, I'll keep managing to be unsuccessful at my PWME task of scamming benefits out of the government.

 

[Michelle]

Can anyone in the US getting any type of social service for ME add to this discussion? Is anyone getting any social service beyond SS Disability payments... something like caregivers, shoppers, or other helpers? What evidence did you have to show to get those services?

I have been receiving SSI for 14 years now (or rather, for 12 years, back dated). I am not eligible for SSDI because I had the temerity to get sick before I had worked for 40 quarters or 10 years (my brother had the temerity to be born with Down Syndrome, so he's not eligible either). SSI - Supplemental Security Income is a minimal payment based on both disability AND need. If you're married to a spouse making money income beyond the barest amount, you are ineligible. When I applied in September 2001, it took an average of 20 months from the time of application to the first check and I was exactly average, receiving my first check (all $554 of it) in July 2003. When I asked my case worker at Aging and Disability Services (which was initially providing me with Food Stamps during the initial application phase) what people do while they wait for the government to decide if I was eligible, she replied that most of her clients were homeless. That's right. In these fine United States of America, if you get sick, you are quite likely to end up on the streets.

My application for SSI was initially denied (I'm not sure what the diagnosis was because nobody had decided what it was I had yet) about 5 months after applying. I applied for a reconsideration, which was also denied another 3 months later. At that point, since I had no assets and was desperately poor (my sole source of income was $135 in Food Stamps and the occasional $5 here and there my dad gave me for gas; he also provided me with housing and paid for my car insurance), I was eligible for Legal Aid to represent me in the next appeal to the Administrative Law Judge phase. That took another year before I had my hearing. When I first applied to SSI, I was immediately sent for psychometric testing which showed that I was having moderate difficulties with short-term memory and concentration and was processing information significantly slower than my IQ would suggest I should be. There was no CPET testing in 2001-2003, and these psychometric results turned out to be my sole source of objective evidence of ME/CFS. I have other health issues (FMS, IBS, asthma, history of pulmonary embolism/DVT, assorted neurological symptoms that are probably ME/CFS-related, obesity). At the hearing, the ancient "medical expert" tried to argue that the other medical issues I had suggested I couldn't have CFS because CFS is the absence of objective medically-explained symptoms (my lawyer was about to bang her head on the table with that one). The judge seemed to think initially that my problem was simply that I had gained a bunch of weight and that's why I was "tired" until he asked me how long I had been at the weight I was at. When I replied "since I was 15 or so," he's entire demeanor changed to being far less adversarial. The vocational expert testified that given my training, my work history, and the severity of my symptoms, there were no jobs in the national economy that I could do. With that, my hearing ended. My lawyer was thrilled. And a month later I was notified that I had won and would be receiving back benefits to Sept. 2001. But first they had to go through all of my bank statements to see what my "economic resources" were. For a few months I had student loans in my account that exceeded the $2000 limit (a limit I was never told about) so I did not receive back benefits for those months. My dad providing me with housing was considered a form of income but my dad provided a letter stating that he did so with the understanding he would be compensated for back rent, so that was not taken out of my back payments so that I could pay him back rent. My lawyer also instructed me to be very certain not to give any information not requested. I think I was still cheated out of $5000 or so in the end that once my lawyer found out about felt she could have challenged but I didn't know and she didn't find out until it was too late.

I have been receiving home care services for 10 years when I became completely housebound in 2005. Initially I was part of a state program called Oregon Project Independence, primarily geared toward older residents who might otherwise end up in assisted living facilities without some additional home support. At that time I received daily Meals-on-Wheels and 10 hours of housekeeping per month -- oh and some help with moving out of student housing (I was a graduate student at the time) and into HUD housing (because I had to drop out of school and, thus, no longer eligible to stay in student accommodation -- to say nothing of no longer being able to afford it w/o student loans). I think I was referred by a social worker at my doctor's office (the County health department). OPI sent someone to my home to assess me, and then set me up with the program.

I stayed in that program for 3-4 years (my memory is a bit hazy if it was 2008 or 2009) when, during my annual in-home assessment, my OPI case worker realized that I was a MediCAID recipient rather than a MediCARE recipient, and, as Medicaid actually pays for home care service and OPI was perpetually on the funding chopping block only to be spared at the last minute and, thus, always looking to get clients into other, safer programs, referred me to the Medicaid program. So, a new case worker came to my home, in-putted my functional capacity scores into his computer program with metrics designed by god-only-knows-who to decide how disabled I am, found that I was eligible for the Medicaid home care program (I suspect just barely so). That increased my homecare/housekeeping hours to 20 hours/month but eliminated my involvement with Meals-on-Wheels (which, while I feel like I'm in danger of going to hell for saying this, I wasn't all that disappointed about given that the meals are...um, of minimal palatability...). I remain in the Medicaid program to this day. The metrics it uses heavily privilege those with spinal cord injuries, strokes, or dementia. In 2011, when I became so ill that all I could do was go to the bathroom and back to bed, I still could not get additional home care service because additional hours required me to need assistance with using the toilet or not knowing where I was. My case worker -- with whom I totally won the Case Worker Lottery -- is always trying to figure out a way to increase my benefits as he agrees that being able to do nothing but get to the toilet is probably not suitable to living alone. But it's mostly a computer that decides rather than him. (In that case, my dad, who was not working at the time, came and stayed with me for several months until I was able to care for myself a bit more -- and even then, once he moved out, we had to put a microwave and a fridge-freezer in my bedroom to help me remain in my home; he also built me a handy all-the-way-over-the bed table, which acts like a desk on wheels).

Other forms of assistance I receive include library outreach for the housebound (they bring me/exchange materials every two months that I put on hold), grocery-shopping and delivery from a local social service agency, medical transportation for the rare times I leave to see a doctor, and a primary care provider who makes housecalls, food stamps (SNAP), subsidized housing through HUD (it's a building specifically for seniors and disabled), and a tiny $15 monthly State (?) benefit for expenses related to being housebound. If I was less housebound, I would also have a disabled parking permit, but it expired 3 years ago and I've not had any need of it in the intervening period.

So, you know, lots of "terrible" people keeping me in the "perpetual cycle of illness and benefits." But it did take some time to fight for those awful benefits. It's generally not easy to get here in the US. I'm probably in a good state for it. @ahimsa may be able to speak to her experience with SSDI that was a little bit more positive than mine. But it really varies by state. I suspect that if you're in, say, Texas, it's probably a lot harder to get benefits with ME/CFS.

 

[Woolie]

So, you know, lots of "terrible" people keeping me in the "perpetual cycle of illness and benefits."

@Michelle, I'm so sorry to hear you have been kept in the "perpetual cycle of illness and benefits".

Those with no benefits, assistance or disability aids, I bet you didn't realise what a lucky escape you had!

 

[Snow Leopard]

Pain, alarm and cats.

This doesn't sound good!

 

[jimells]

Can anyone in the US getting any type of social service for ME add to this discussion? Is anyone getting any social service beyond SS Disability payments... something like caregivers, shoppers, or other helpers? What evidence did you have to show to get those services? What is required to get SSDI? It's not just a matter of applying with sufficient proof, either. Don't you have to have been working shortly before you apply, so if you were sick a long time before applying or if you were a stay-at-home mom, you're not eligible for SSDI, right? There must be some other way for people in those circumstances not to be starving on the street. Some sort of poverty benefit?

After fighting with Social Security for six years I now receive Social Security Disability, Medicare, and the "Medicare Buy-in" (Medicaid pays the Medicare premiums, deductibles and most of the copays. I also get $15 a month (WOW!) in food stamps. But no homecare, shoppers, or other helpers. After struggling to get additional help for six months, I just recently got onto a six-month wait list for an evaluation to see if I qualify for any kind of homecare at a "reduced rate".

The medical care, although fully paid for as long as I don't go to out-of-state providers, is nearly useless, as I am stuck with a Primary Care provider who believes my illness is "primarily psychological".

The main requirement to get SSDI (besides being able to live for years on no income, good luck with that) is to have lots of records from lots of doctors and several (probably at least two) signed statements from doctors that are crystal clear that the patient can not perform any fulltime job that exists anywhere in the U.S.

Another requirement is to hire some useless scumbag attorney who won't lift a finger until it is time to write a brief for the Administrative Law Judge hearing. The lawyer will take 25% of the retroactive lump sum benefits payment, so thay have an interest in delaying the hearing as long as possible. (It's not a "conspiracy" - it just happens to work well for all concerned, except the patient, and who cares about them anyway?)

If a person doesn't have the requisite work history to qualify for regular SSDI they can still get Supplemental Security Income (SSI), so in theory everyone is taken care of (sort of), if they can survive the process and ultimately win their benefits.

The "secret" to getting any kind of home care is to have full Medicaid, which I had until I won SS disability. That modest monthly benefit puts me $20 a month over some arbitrary limit, so I was kicked off. Apparently I am supposed to be able to hire help on $20 a month?

 

[jimells]

what people do while they wait for the government to decide if I was eligible, she replied that most of her clients were homeless. That's right. In these fine United States of America, if you get sick, you are quite likely to end up on the streets.

This nearly happened to me. While I was fighting for disability, my former partner sued me to take my home. When I finally received a date for the Social Security hearing, it would've been after "my Day in Court". So I filed for bankruptcy, which puts a stay on all civil proceedings, whether debt related or not. Bankruptcy takes a minimum of about three months, if I recall correctly, so this can give a person some breathing room.

Fortunately the State of Maine has generous debtor protection laws, and the value of my home (mortgage-free, of course) was less that the maximum value of protected assets, making me essentially "judgement proof", i.e., my home couldn't be seized and sold-off as part of the bankruptcy proceedings.

Meanwhile the ALJ hearing for disability went ahead and I was awarded benefits. Much of the retroactive benefits went to the disability lawyers and to settle the lawsuit with my former partner, but I did manage to have enough left over to replace the roof which had been leaking badly for a few years (I had to replace the roof tarps several times)

If I had not won disability benefits I would certainly be dead by now. Since there is no way I can survive living under a bridge, I would've only left my home feet-first. Like everywhere else in the U.S., the cops would've been happy to oblige - they killed my next-door neighbor's brother in his own house, in front of his mother, earlier this year.

People might sometimes wonder why my posts are so critical of the institutions (both state and private) that push us around like cattle. This is why. I have seen the true face of "American Democracy", up close and personal, more times than I can shake a stick at. It is ugly and barbaric - society literally does not care if any individual lives or dies (other than certain VIPs, of course), and when it comes to "Useless Eaters" like us, it would prefer the latter.

 

[SOC]

@Michelle,
I'm so sorry to hear of all the problems you are having! I'm glad, though, that you have been able to secure some services although it sounds like a very difficult process.

I'm in a "good" phase at the moment and can manage my own basic housework and shopping, but I worry what will happen if I end up housebound again. My guess is that if I became severe and bedbound again I could convince someone to approve some social services, but I'm not so sure that's true if I only declined to where I was several years ago -- unable to drive, do housework, or shop, but able to be out of bed. My GP never thought I was sick enough to warrant services, even when I came into her office in a wheelchair.

Now, thanks to you, I know to demand a referral to a social worker for an evaluation for services. Hopefully now that CPET testing seems to work as evidence of disability in PWME, I could go that route if necessary. It's still not clear to me what evidence of disability you had to provide to get services. You said somebody came and put in functional capacity scores. Do you mind saying how those scores were determined? I can't imagine an assessor just asking me what I can and can't do and taking my word for it.

Thanks for all that helpful info!

 

[ahimsa]

I see that @Michelle tagged me ( Hi, Michelle! ) so I'll try to add what I can to this thread.

I think she and @jimells have given a good outline of how bare bones the support system is in the USA. You have to really know what you're doing just to get the basic level of support to live. It's sad that people end up homeless when they fall through the cracks.

SSDI is an insurance program (SSDI = Social Security Disability Insurance) and is paid for by payroll taxes (FICA). A person is only eligible for SSDI benefits if they have paid in enough premiums while working. This means anyone who has not paid enough taxes - e.g., someone still in college, or a wife/husband/partner who does not work outside the home, or someone who only worked for a short time before getting sick - these people are not eligible for SSDI. There are also people who have jobs (some colleges/universities, for example) who pay into a different fund for their disability/retirement plan.

I was VERY lucky to have a husband who was working (and still is working) when I got sick. He had to do EVERYTHING - groceries, laundry, cooking or take-out, dishes plus full time work at a stressful job. Not to mention taking me to doctor appointments, renting a wheelchair, and so many things I'm sure I've forgotten. But at least there were no money problems. I don't know how I would have survived without him.

My experience with filing for SSDI was fairly straightforward. My claim was approved on my first try, no denial at all. I don't know for sure what helped me but I have a few guesses.

One thing is that I kept going back to work between when I first got sick in 1990 and when I filled for SSDI in 2000. I did not have to file for disability the very first time I got sick. I was definitely too sick to work (and often too sick to leave the house) quite a few times between 1990 and 2000. However, I did not stay at the same bedridden level. When I was able to rest (I took many short term medical leaves) I would recover slightly and then return to work.

I did this cycle (work/rest) a bunch of times. Almost every time I was sure that this time I was finally completely recovered! (Like the old cartoon -- Bullwinkle, "Watch me pull a rabbit out of this hat!" Rocky, "Again? That trick never works!") My "false illness belief" was that I could not possibly be too disabled to work. Too disabled to hike and lift weights? Maybe. But how could I be too sick for a desk job? I was in serious denial.

Anyway, I had a long history trying to work and failing by the time I filed for SSDI. There was also a long history of medical tests. And my application came right after SSA had rewritten the CFS policy to include tilt table testing (which I had done in 1995) as one type of evidence.

Finally, I was working with a lawyer for my ERISA long term disability claim (employer provided disability insurance) at the same time that I was filing for SSDI. So everything that was submitted for that claim got copied and submitted to social security, too. I think that helped. So, although I did not hire a lawyer for SSDI, there was some indirect benefit from what my lawyer was collecting and submitting for my ERISA claim.

I feel like this may have drifted off topic but I hope it is somewhat helpful.

 

[Michelle]

You said somebody came and put in functional capacity scores. Do you mind saying how those scores were determined? I can't imagine an assessor just asking me what I can and can't do and taking my word for it.

Believe it or not, that's precisely what they did. For the non-Medicaid program, Oregon Project Independence, a woman came and asked what I could and couldn't do and then signed me up (indeed, most of the programs I mentioned determine eligibility the same way). For the Medicaid program, a computer was involved, but essentially it was the same deal of asking me questions about what I could and couldn't do, how often I could or couldn't, etc. and inputting that data into the computer and waiting to see what the computer said I was eligible for. Like I said, I don't know the exact metrics they use to determine eligibility but that it heavily privileges people with spinal cord injuries like quadriplegics (but I know, for instance, that, say, paraplegics are generally not eligible) and people with dementia.

It means, of course, there is an enormous level of arbitrariness to the whole process. I've been supremely lucky to get exceptionally caring and competent social workers. To live in a city/state with a lot of support (hell, we even have programs for low-no cost acupuncture if you can get to them!). To be white and "honest" looking. To have intellectual resources (I was in graduate school when I got sick). To have had my dad to help me while I was waiting for SSI and when I fell into the Medicaid home-care dead-zone. To have come to the top of the waiting list for the apartment building I'm in when I did (I have an amazing apartment with a breath-taking view). To have gotten the judge and vocational-expert I did at my hearing. To have gotten a competent, if over-worked, Legal Aid lawyer. To have always had primary care providers who have taken my disease and symptoms seriously (even if all they can offer is symptomatic treatment since there is no agreed upon standard of care for ME/SEID and Medicaid will not cover experimental treatments -- or anything even slightly expensive!). I feel so very lucky in so many ways, despite being completely housebound and mostly bedbound (I can manage an hour or so out of bed each day).

Too disabled to hike and lift weights? Maybe. But how could I be too sick for a desk job? I was in serious denial.

I was like that for the first three years I was sick. I kept having the same argument with my primary care provider, who wanted me to take a year off of school to try to recover. To which I would respond, well, yes, that'd be nice except I need to maintain 9 credit hours to keep my graduate assistantship and I can't think of any job less demanding than the one I had. And she had nothing to say to that because we had no such thing as paid leave for people in my position (and still don't for the vast majority of the country). Finally the therapist I was seeing -- initially about some other issues but eventually illness came to dominate sessions -- said to me that it was time to talk about going on disability. I was like, "what the hell? disabled? huh? I mean, I get sick, but I'm not disabled...I've still got 2 good eyes, ears, hands...er...good enough legs (I've got EDS but didn't know then and had a lot of injury/problems esp. w/right leg)." I was missing a ton of work. Had a pile of incompletes. But balked at disability. My perception of my functional capacity versus the reality of my functional capacity was totally askew to the point where I was downright delusional (which the lack of a test to tell you that you have ME/SEID and how bad your ME/SEID is really encourages this). Hell, I think that's been the story of my entire illness experience.

 

[Michelle]

People might sometimes wonder why my posts are so critical of the institutions (both state and private) that push us around like cattle. This is why. I have seen the true face of "American Democracy", up close and personal, more times than I can shake a stick at. It is ugly and barbaric - society literally does not care if any individual lives or dies (other than certain VIPs, of course), and when it comes to "Useless Eaters" like us, it would prefer the latter.

I pretty much agree with this though would add that most healthy Americans have no clue how the system works if you get sick. I certainly didn't before I got sick. I just assumed I'd go sign up like you do for Food Stamps (which we got on and off when I was a kid up through high school). Had I known it was going to take nearly 2 years to get an income (and that "income" would be so paltry -- $554!), I probably would have tried to hang in there even longer, with god only knows what consequences to my health. When I tell people how the system actually works, they are shocked. But at the end of the day, "American Democracy" as it is currently practiced is primarily about fear. Just enough fear to keep people in line, but not too much that people feel they have nothing to lose.

Sorry. Off topic, I know...What were we saying about Dr Dreary?

 

[worldbackwards]

What I want to know is how they get the tomatoes in there.

https://twitter.com/i/web/status/716971136295243777

 

[Woolie]

I realise now I'm sick because I have an entire trout stuck in my head.

 

[worldbackwards]

I realise now I'm sick because I have an entire trout stuck in my head.

Be sure that Rona Moss-Morris blames you for the fish and knows that you can remove it whenever you want to.

"Doctor, I appear to be suffering from medically unexplained plankton..."

 

[Chrisb]

I interpreted this differently. I thought the trout and tomatoes were in in the heads of Dreary and Ross Morris. They at least might have sufficient empty space to accommodate such additions.

 

[Snow Leopard]

I realise now I'm sick because I have an entire trout stuck in my head.

I'm worried some tomatoes are going to sprout out of my ears!

 

[Daisymay]

I realise now I'm sick because I have an entire trout stuck in my head.

Sounds a bit fishy to me....