What do we want ME care to look like?

It would be interesting to write up our own ME care guide.
There are probably many out there already but if none are as good as what we could write then it would be worth pursuing.

 

I don't want to sidetrack this thread, but this is a very different model from what the CDC in the United States proposes.

In the CDC model, there is no ME specialist or ME nurse. The primary care doctor is at the center of diagnosis, development and implementation of a treatment plan, as well as ongoing modifications to treatment. The primary care doctor also refers out to specialists as needed.

CDC makes a brief mention of home care for severe patients.

I am concerned that in the CDC model, primary doctors won't have sufficient time or sufficient training to provide complete ME/CFS care. But it's better than what is currently being offered by most healthcare plans.

PS: Excellent writeup @Hutan. It's certainly got me thinking about how to improve clincal care.

 

Good start. I think it would be worth getting a clearer idea of the provision (nice guidelines?) for other chronic conditions (ra, ms, Parkinson’s etc) and to look at progressive vs non progressive. This would give us references to refer to?

I also think we shouldn’t directly compare our situation to cancer since this is not apples and apples (mainly from the mortality/recovery rate, treatments available and prevalence). It would also be good to get an idea of whether these services are well received or have problems with them by reviewing some of the specific forums ...nice guidelines don’t necessarily mean they are being carried out as per the guideline or that the guideline works.

I would like to see a requirement for symptom monitoring. tools could be offered by the nurse (apps/diaries/help with symptom classification) and the results from these could be monitored by patient and gP every 3-6 months. Again quite cheap to implement but would help a lot (and currently blocked by it being perceived as ‘dwelling on symptoms”)

 

The CDC doesn't have specific Multiple Sclerosis or Parkinson's sections listed in their "A – Z Index for ALL CDC Topics".

https://www.cdc.gov/az/a.html

PS: In the past, I've complained directly to my provider that ME/CFS patients should get the same level of specialist care that MS and Parkinson's patients routinely get. That ME/CFS patients should be able to see a doctor familiar with their disease, just like MS and Parkinson's patients routinely do. My complaint was denied.

 

Excellent simple Service Specification- and not too much to ask! Parity with other Neurological conditions like MS should be in the spec now ME is coded on Snowmed as a neuro condition for GPs.

 

If I could add one more resource to the care team I would want to make available, on a voluntary basis, a compassionate social worker to provide emotional support and advocacy around all the losses and and adjustments of a life turned upside down by M.E.

It would be imperative that they be someone who understands the biological aspects of the illness and absolutely not be someone who buys into the somatization model.

They could could provide support to the person with M.E. and their significant others as they adjust to changes in family roles. They could also help them cope with the challenges of stigma and ignorance within the person’s social network and develop strategies to advocate for respectful, competent care within the medical system.

As a social worker and someone who lives with M.E. I am proud of the tradition within my profession of supporting people on the margins such as people with HIV and other stigmatized illnesses, people struggling with homelessness/poverty, people fleeing domestic abuse, survivors of sexual abuse and many others who were historically stigmatized, disbelieved and abandoned by mainstream medical professionals. I can tell you there are some really good social workers out there who would find these roles in caring for people with M.E. very meaningful.

 

Excellent work @Hutan. Sadly your very reasonable suggestions go soooo far beyond what's currently offered where I live it's not funny.

Yet I would like to see even more, at least for severe patients.

Home/Skype visits by specialist ME staff should of course be a must. Additionally doctors should do home/Skype visits for any non-ME issues for those unfortunates hit by more than one illness. That your appointment is for arthritis rather than ME doesn't mean you won't magically not crash from the travel exertion.

Where travel to a specialist center or hospital is unavoidable, say for cancer treatment, suitable transport should be offered, e.g. ambulance transport for those prone to crashing from OI. Followed by suitable – quiet – accommodation at the destination where staff know how to deal with ME patients.

And, while we're dreaming, why not a mobile dental and eye care service as well?

All of which may cost more short term but would help prevent more serious - and even more costly - complications later.

 

"What do we want ME care to look like?"

Caring.

 

what follows is forum splatter. i am not up to a real post.

===

good point. we can make positive statements about what is
needed. we don't have to just fight bad things.

instead of playing whack-a-mole, by showing what is needed
we even SHOW that the entire frame of reference is wrong.

we can get across the reality of what is needed.

===

for what it is worth, i can say one thing for sure that's
not often mentioned:

the needs of bedridden and housebound are completely
unnoticed in many cases. i have absolutely no doubt that
many pwme have gotten sicker (from mild), become bedridden,
and died NOT solely because of m.e., but because they had
nobody to do basic things for them that they could not do.
including even finding out what services are available.

or because there were no services.

you fall through the cracks because you have m.e., and then
fall through deeper because you are severe, and then fall
through deeper again because you have multiple health issues
and comorbidities that prevent ability to do things further.

and then fall through again because they interact with one
another, and then fall through again because they are in
their own right serious, and then fall through again because
some of them are "weird".

and then fall through again because nobody cares.

and then fall though again because those cracks are
completely unrecognized, even in the best outward-facing
channels-of-power-using advocacy the community has ever been
able to accomplish.

===

so what kind of thing can the community present to those who
are in a position to do something (like members of
parliament and senators and agency or ministry heads)?

one thing some technical types do is talk about USE
CASES. they define representative people+goal,
and analyze whether they have met those needs.

we could do the same, but ensure we are really showing our
use cases accurately and including the ones with the most
needs, in addition to the most common ones.

===

to make this concrete, imagine:

1) whitney dafoe
2) whitney dafoe, without a family that believes him
3) whitney dafoe, without a family that is there for him
4) whitney dafoe, without a family of means
5) whitney dafoe, without a family
6) whitney dafoe, without anybody to find out about services
7) whitney dafoe, without anybody to deal with bureaucracy
8) whitney dafoe, without anybody to deal with finances
9) whitney dafoe, without anybody to talk to medical
offices
10) whitney dafoe, without anybody to maintain his medical
equipment
11) whitney dafoe, without medical care
12) whitney dafoe, without dental care
13) whitney dafoe, without vision care
14) whitney dafoe, without sufficient nursing care
15) whitney dafoe, without specialists in his COMORBIDITIES
16) whitney dafoe, without specialists in his
comorbidities WHO CAN MAKE HOUSE CALLS
17) whitney dafoe, without specialists in his
comorbidities who understand that he has MORE THAN ONE
INTERACTING DISEASE SIMULTANEOUSLY THAT INTERFERES
WITH TREATMENT OR DIAGNOSIS FOR THE COMORBIDITY THAT
THE SPECIALIST IS A SPECIALIST IN
18) whitney dafoe, without cooking and cleaning services
19) whitney dafoe, without people to bring him food
20) whitney dafoe, without people to bring him medicine
21) whitney dafoe, without people WHO UNDERSTAND HIS NEEDS
22) whitney dafoe, without people who understand his MANY
and SPECIAL and PERSON-SPECIFIC needs
23) whitney dafoe (who cannot use skype)
24) whitney dafoe, without respect
25) whitney dafoe, without a smart scientist father who
silently sits outside the door until whitney sits up,
careful not to trigger whitney's social-reasoning
neurons and thus cause him to get sicker, and uses
that time to figure out why whitney is sick.

of course not saying whitney is fortunate. saying there are
many people who fit the above use cases.

===

if any people who are responsible for pwme has any use case
in mind, it is probably something like "gets tired at work
and can't socialize as much as wants to".

also "has to put head on hand at dinner gatherings".

those are use cases too in principle. THE MILDEST SUFFERER DESERVES TO
BE PART OF THE COMMUNITY and recognized for needs too. also
unusual sufferers. they belong.

and a mild sufferer is one exposure away from becoming severe.

===

but let's not forget the /above/ use cases, because they go
unnoticed. and because the needs are life-threatening.

if not for whitney's family, we would not be hearing about
him on this forum. or thinking about his needs much. (see my signature.)

he cannot be on the forum. this is a selection/availability
bias. so we don't think about or know his needs.

===

the natural inclination of agency heads is to forget him.
regardless of the constraints of the interview, francis
collins was astounded that people could be bedridden for
"weeks". he was told (including in an open letter from me),
but probably put it out of his mind immediately.

which means we have a lot of work to do.

===

so what do we need? imo what we need is a powerful and
accelerating social movement [see bill moyer movement action plan]. one or more that covers m.e., neglected chronic diseases, and misopathy. (idk yet
in what combinatorics.)

and we need to drill into people's heads that not every pwme
wants to "live with their disability because society can
accommodate it and they can do pacing and then they can live
full lives". this disease needs not just accommodating, but
fixing the UNDERLYING BIOMEDICAL PROBLEMS. for
all subsets and genotypes AND COMORBIDITY PATTERNS and
symptom profiles.

and get those fixes into people's bodies in reality and in
real time not imaginary time. this will also mean PAYING
FOR THE HARM THE AUTHORITIES CAUSED. including paying for
that medicine if necessary no matter the cost. would you be
using rituximab if that had not failed and were still on
patent? not what payers want to hear but what needs
to occur. there is no getting around it. hiding behind rules does not stop people from dying. rules will need to change faster than any bureaucrat will want. and, personal point: i need a mold-safe house. what's going to keep me alive?

===

aids made rules change. aids has services: http://www.nytimes.com/1997/11/12/us/new-challenge-to-idea-that-aids-is-special.html .
in venezuela they literally call it a genocide when there is a shortage of free antiretrovirals. they have power. (i do not recommend using the term genocide for m.e.. btw, i have unpublished posts from many years on genocide, the international community, and related topics. i recommend using the term misopathy.)

===

we can and will have that kind of power if we work for it.

i do not believe that most of us will improve without it. many will not survive without it.

===

but mainly i wanted to say i like the idea of this thread.

 

So one of the things that I've learnt from being in hospital is that the NHS gives patients injections to reduce the risk of blood clots due to inactivity - so far I've had two in the four and a bit days I've been here. I would of thought this is something that would be very appropriate for many, if not all, of the more severely affected patients out there.

 

Not sure if this is right place for this, but was just communicating with a doctor (in the US) who wants to make heart rate monitors available for thousands of ME/CFS patients. The issue is that, depending on what insurance plan the person has, heart rate monitors may or may not be covered.

So some patients might get heart rate monitors for free, while others would be required to purchase them. A real mess.