Discussion in 'BioMedical ME/CFS Research' started by John Mac, Jan 20, 2021.
A US doctor prescribed Hospice for a very severe MECFS patient. Hospice rejected her because she didn't fit the mold.
Using my polite language, the US healthcare system is broken. The rich receive extraordinary levels of care.
Yup, you have to be on a path to imminent death (six months to a year, I think) to qualify for hospice here in the US.
Is that different in many countries?
And, in particular, do many people with ME/CFS who are not expected to die anytime soon get hospice care in any countries? It's not something I had ever considered looking for as an advocate.
My only experience of hospices in the UK is providing respite care for people who have high levels of need but are not terminally ill. A couple of elderly relatives have benefitted from it whilst the children who cared from them took a holiday. One auntie said it was always a nice holiday for her too, as the place had extensive and beautiful gardens, and there was a positive outlook and much more laughter than she'd experienced in the care home they'd used previously.
Their care was paid for (though it wasn't prohibitively expensive, and in one case it was funded by the local authority), so I guess it forms an income stream for the charities that run them.
yes my local hospice ctaers for respite (as you descrbe) too.
Have different degrees of homeboundedness been described? I think one way to measure differing degrees of being homebound would be the number of hours per week one can't get out and about. Of course there are problems with this. Does it mean not going out in your yard, or on your apartment balcony, or emptying the garbage etc.? I'm mostly housebound; often on the couch all morning, and evening. I do get out and about a few hours/week, but the vast majority of the time, I'm in the house. I often crash after my trips "abroad".
I wonder if there is a "strict" medical definition of homebound. Physicians seeing pwME might find it difficult to believe their patient who identifies as homebound.
I’ve only had a skim of this. It’s good that they are looking at the classification in more detail but I had an overall feeling of being underwhelmed I’m afraid. It felt a bit superficial in its content....more about entymoloogy than anything else and only skirted over the elephant in the room which is the randomness of people’s choices based on circumstance ...it still falls into the trap of using fixed terms based on one aspect of living (housebound). It starts to try and explain the differences found but fails to address the main issue with the current classification. As I said I skimmed it so perhaps there is more here than I am giving credit?
I don’t class myself as severe but I would class my lifestyle as ‘mostly housebound’ despite being mild and working sort of full time. It’s the fact that I work full time that makes me housebound. The last time I left the house other than to travel to work (6 min drive) outside of the pandemic period was to go on a weeks holiday in Devon (I.e quite the energy expenditure). Prior to that I hadn’t left the house to do any leisure activity for a year. If I lived on my own I would find it necessary to leave the house to run errands (my wife and son do most of these). If I couldn’t afford home delivery for shopping, I would need to leave the house to shop. I would then have to work part time etc etc. The authors sort of recognised this similar effect In the severe group but conservatively (to use their words) excluded the ‘probably housebound” from the housebound group on the basis that they probably could leave the house if they wanted to.
so using everyday terms like ‘bed bound’, ‘light housework’, ‘housebound’ seems like it will always end in something that can be misinterpreted.
I find that we are being over simplistic in using these terms ..it doesn’t describe things adequately or differentiate levels of severity properly in my opinion. You also end up with a term that people recognise but can be misinterpreted so not much better than what we already have.
having said that I think it moves us in a small direction forward and it’s good to see any study that explores the severe and very severe even if it doesn’t fully describe the limitations adequately.
I guess it shows the limitations of such studies more than anything else.
Edit: whilst the study of insects may be interesting it perhaps us not relevant to this post or thread ...edited to correct wording entymology
Perhaps entomologists are not best placed to observe elephants. Whether in rooms, or not.
Sorry. I could not resist. I say such things all the time.
Yes and don’t I know it ...luckily I’m a sarcastic b*****d too
I think it might be useful to find an additional measure when it comes to ME. I don't consider myself housebound at all, for instance, but I can't get out without a wheelchair and my number of hours out per week are very limited.
One way of distinguishing between levels of severity might be to look at how a person's life might be affected if they had access to a powered mobility vehicle that met all their comfort needs, along with assistance to get it from one place to another. The number of hours per week they could theoretically spend away from the house if they had such things might be revealing – including illustrating just how much the limited access ME patients have to powered mobility restricts their lives and potential productivity.
It would, of course, make little difference to patients with the most severe illness, as simply transferring into a supine chair from their beds would exhaust their energy resources, let alone having to cope with outdoor stimuli. It's important to be able to separate this population from those who're limited more by social and financial factors, though.
@Kitty I think your idea re looking at mobility chair assistance is a good one. Assistance to see if this effects activity level. Though a complication might be for those with OI when sitting upright.
On another bit of this topic, we, the general we, always want to label everything. Pigeon hole people into distinct categories. As regards ME categories, variability is one of the main issues. We might waver between two or three levels, but l know some pwME who feel great for several weeks, then horribly crash for weeks or months. Much wilder swings than I have.
On the employment/disability front, categorizing a person's ME, can be problematic for them. Those in authority who have little knowledge or understanding of this disease may judge harshly one pwME who cannot work at all, because they have seen another pwME who can work part time. If we asked that same employer, doctor, etc. , if everyone is equally affected by colds and flu, or for that matter, more serious diseases, they would say no. There is variability. Odd and very frustrating that our community has had to struggle just to get across the fact this disease affects everyone differently. There are of course, basic similarities as per the appropriate case definitions, but from there we each have our own ME.
Absolutely – I think one of the most problematic things is what 'able to do' means. There's a perception among employers and personnel managers that the answer to this question is both concrete and permanent for most disabled people.
Q: "Can you stand unaided?"
A: "No, I'm paralysed from the waist down."
In reality it's not always the case, as some people with paraplegia may be able to stand using assistive devices. But it's more concrete and permanent than it is for people with ME.
Q: "The client you're expecting can't get in through the security door. Can you walk down two flights of stairs to let them in?"
A: "No, it would cause a lot of pain and PEM and there's a risk of injury from falling."
Q: "There's a ticking bomb in the building. Can you walk down two flights of stairs to save your life?"
The debate there, of course, is where is the line between a routine issue and an emergency. In employment situations it's often impossible to draw it accurately in the first place, and there is enormous pressure to veer over it at times. And once you have crossed it – apparently without incident, as no-one sees the pain and PEM – it becomes an expectation that you will do so again. And then it becomes a daily expectation.
there are the very severe patients totally bedbound, and severe unable to use wheelchair but can eg manage to get to loo. So many shades of disability.
Yes. In regular life, if there is such a thing, tasks can more easily be added. At least up to a point. In ME, tasks often have to be subtracted. Sometimes activities are just a one time thing. We cannot necessarily rely on our health to be able to do a specific activity again.
In the 80s there was a category for getting free prescriptions which was "unable to leave house without help". This with the proviso as in Disabled Living Allowance "even if that help is not available" seems to cover a lot of the problems.
It is the loss of independence that is the main factor. If you can't live independently then you should be entitled to care for instance.
I think we can be too picky about some of these things. It is important to have research that proves that 25% of people with ME are housebound or bedridden because this gives a measure of how serious ME is. The perception that we do not need care or benefits is because people think of CFS as feeling a bit tired. Pushing the truth that we have children too sick to leave their beds is important.
It is also necessary so we can refute studies where no one with severe disease is included especially BPS and MUS ones.
All diseases use shorthands and many people are not easily classified but we have to be realistic. if a doctor asks if you are housebound he does not want to know that you can get out once a month if you are having a good day, he wants to get an overview of how you are usually affected.
I looked this up a few days ago, and the operating definition, by GP's in the UK seems to be;
Which still leaves me none the wiser but as it uses 'at all', whereas I can, under normal circumstances, leave occasionally, for specific reason, provided the destination isn't too far from a bus stop, with nothing delayed, and in general everything goes perfectly (yeah right), then I can, sometimes, do stuff outside, almost always with payback.
This would suggest that according to the above definition, as they don't acknowledge PEM, and one step outside my front door (which is 30 foot up a stairwell) breaks the 'at all' clause - that GPs in the UK would not consider me housebound - and this is my experience.
The fact remains that I can very rarely go out, that I do not go out for social or recreational reasons, that even on the very, very ,very rare occasions that I do I plan so a trip from my front door to the door of my room in a hotel in Newcastle is under 1000 steps (over a day) - and I almost always get payback, even with a trip to my electricity meter or even the bins downstairs.
I still haven't got back to where I was before my last 'social' trip out, over a year ago, mainly because things didn't go perfectly on the way back. Things rarely go perfectly - which is another thing that people don't take into account.
I am 'quite limited' in what I can do, distances and time outside - and in general if it wasn't for critical need then I probably wouldn't go out at all. Far too limited to be able to justify it for recreation given the payback, and its impact on my ability to maintain the basics, these days.
Definitions are useful up to a point but mainly for legal reasons, not everyday life. We all know what is a lorry and what is a car but a definition is much harder and there is always a grey area at the edges.
Cut off points are always dangerous in medicine. You have a disease with a reading of 4 but are healthy at 3.95 as long as symptoms are no taken into account is the sort of pedantic reasoning that leads to a lot of injustice.
The DWP uses this sort of reasoning when it asks if you can climb one step and takes a yes to mean you have no problem with stairs.
The GP definition says only leafing house with significant help. If you have no help but could go without notice if you had help to get you into outdoor clothes, help you into a wheelchair then into a car, I think it is fair to say you meet the definition.
Despite payback is not being taken into account by anyone outside the ME community I think it is fair and reasonable for us to include it. If you can't do anything outside the house because of significant payback of ME it is fair to say you are housebound.
Doing a Google search it seems each CCG and each GP practice is setting its own definition of what a 'housebound' patient is, so effectively patients are being left with a postcode lottery and depend on individual clinicians to 'approve' their needs.
See for example:
If it does go this way, what hope will severe ME patients have to obtain consistent care, as they will never even have chance to build a relationship with a GP to establish their needs?
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