Looking for Ideas to Improve Primary Care of ME/CFS - Health Foundation Project

[Sasha]

I think 'scales' should be treated with a great deal of caution. As recording instruments they may be ok but we shouldn't assume that random sets of questions can lead to linear scales.

Developing a valid scale is a very specialised area - there's a lot to it. You just have to look at what a mess the Chalder Fatigue Scale is.

 

[Keela Too]

Still hoping for other innovations - tech, practices, things Ive not thought of.

I would love to see GPs making more use of heart rate monitors to help ME folk to keep within their safe exertion boundaries. Would this be an innovation they would consider?

The other aspect is activity monitoring via step counters such as Fitbit ... and the more modern ones of these also do heart rate.

 

[Hutan]

My following suggestion fits more into the 'cushion under the head' category rather than 'bus off the legs' category, but anyway:

Over the years I have had a lot of tests (and my two children were/are sick with the same thing - so we have three sets of extensive testing). Some were ordered by my GP, some were ordered by specialists. Very often I would not get copies of results without asking. Very often my GP would not be sent copies of the results ordered by specialists as well. In my state of exhaustion, I often couldn't remember what tests we had had.

After I while, I realised I had to take charge of the results. So I set up spreadsheets to record and track results. My GP got much better at ensuring I got the test results. It wasn't that she was opposed to me having the information; it's just that she had not thought about it.

My GP and I have found the excel sheets very useful. But, it takes energy and I didn't think of it until about a year in to our illnesses, when we were all getting slightly better.

I think some countries manage patient test data much better than others. Technology has a huge role to play here in consolidating patient data and making it available to the patients and their doctors. It is something that could be useful for all patients but is especially useful for patients with chronic illnesses that are poorly understood and/or that affect many body systems.

Edit - thanks Keith, your efforts are appreciated.

 

[TiredSam]

My following suggestion fits more into the 'cushion under the head' category rather than 'bus off the legs' category, but anyway:

Over the years I have had a lot of tests (and my two children were/are sick with the same thing - so we have three sets of extensive testing). Some were ordered by my GP, some were ordered by specialists. Very often I would not get copies of results without asking. Very often my GP would not be sent copies of the results ordered by specialists as well. In my state of exhaustion, I often couldn't remember what tests we had had.

After I while, I realised I had to take charge of the results. So I set up spreadsheets to record and track results. My GP got much better at ensuring I got the test results. It wasn't that she was opposed to me having the information; it's just that she had not thought about it.

My GP and I have found the excel sheets very useful. But, it takes energy and I didn't think of it until about a year in to our illnesses, when we were all getting slightly better.

I think some countries manage patient test data much better than others. Technology has a huge role to play here in consolidating patient data and making it available to the patients and their doctors. It is something that could be useful for all patients but is especially useful for patients with chronic illnesses that are poorly understood and/or that affect many body systems.

Edit - thanks Keith, your efforts are appreciated.

My Dr in Germany uses this system:

http://www.cgm.com/uk/product_solut...t_and__e_prescription_1/e_prescription.en.jsp

So I can access my records, examination results, re-order prescriptions and make appointments by logging in from home. Other similar systems may be available, not sure if their range of services is as extensive in the UK as it is in Germany, but someone else will probably be offering something similar.

 

[Hutan]

@TiredSam, that system looks nice.

I don't know how widespread the use of systems like that is in the UK. If it isn't widespread, then perhaps a good Innovations in Primary Care project could be the introduction of such a system in one or more clinics. What are the difficulties, what are the benefits as perceived by doctors, admin staff, patients with chronic illnesses? (Even just including some ME/CFS patients in the survey helps us to be more visible and legitimises our illness).

I saw your comment Keith that the project can't be about getting doctors to perform certain medical tests. But once you have a data management system, it becomes easier to implement clinic protocols for testing. For some chronic diseases, you might have a checklist of annual tests - with the system generating an automated reminder.

For suspected ME/CFS, you might have a guideline listing tests to exclude other possibilities. Surely the NHS wouldn't object to that? Potentially money (and patients' energy) is saved by avoiding duplicated testing and needless appointments with expensive specialists. A treatable illness might be found. I think patients would feel happier if they felt there was a systematic approach to evaluating their illness.

 

[Keith Geraghty]

ill consider all ideas very closely - and do some background reeading.

 

[JohnCB]

Firstly a thank you to Keith for taking the effort and initiative on this.

Health scales with this illness are a very hard thing. There are already several of these out there but it tends to be always the case of some patients with ME fit into a scale well while others dont eg many scales have more then one thing mentioned at each level and I may meet something in one area with this illness say its something which puts me at a 4/10 on the scale but it ends up clashing with something else further up on the scale which I met. Im yet to fit cosy into any of the scales.

I think 'scales' should be treated with a great deal of caution. As recording instruments they may be ok but we shouldn't assume that random sets of questions can lead to linear scales. There are dangers that with sets of questions a move from 5 to 6 is not the same as a move from 6 to 7. Looking at things like the SF36 scale and detailed answers suggests that there are a bunch of questions at the middle that are bunched and not well ordered.

If you have 10 questions for levels are they always ordered in that way for every set of symptoms and if so are the equidistant.

Thanks to Tania and User9876 for writing out a couple of things that I had been thinking. I agree with these points. I think there is a reason that there are multiple scales for multiple situations. These issues are a long way from being straightforward.

Fatigue is a large part of the health scale for us and I don't think there is one thing that is called fatigue. It is many different things and means different things with different illnesses and different subsets of our illnesses. Fatigue for a diabetic is diffferent to fatigue for a depressive and both are different to the experience of a PwME.

Another factor is that subjectively we place ourselves at different points on our own internal scale according to how well we are able to do the things that matter to us. I rate myself higher if I am able to read novels on a regular basis.

We also rate ourselves differently according to what we have done to cope. Objectively I am worse in that I can no longer watch TV. Subjectively I feel a bit better now that I am no longer trying to watch TV.

I am inclined to think that a simple scale is a simplistic scale.

Edit: typo.

 

[AndyPR]

Here in the UK we have this - https://www.england.nhs.uk/ourwork/pe/patient-online/

From the page linked

Patient Online is an NHS England programme designed to support GP practices to offer and promote online services to patients, including access to coded information in records, appointment booking and ordering of repeat prescriptions.
......
Today, the majority of GP practices already offer online services, including appointment booking, ordering of repeat prescription, and access to summary information in records. GP practices will increasingly expand online services over the next year. By April 2016, online patient records should include coded information on medication, allergies, illnesses, immunisations and test results.

To be honest, looking at the page again, it's horrible to look at with brain fog, so cluttered. Anyway, I had to find out about this myself online from another sufferer, my GP/surgery hasn't ever made any mention of it at all.

 

[Valentijn]

It might sound a bit perverse, but I think a CBT/GET summary chart might be useful.

For this sort of project, it sounds like contradicting NICE or the research is basically not allowed. But specifying the types of benefits and reported harms of those treatments (and pacing) could be helpful in showing the "limitations" of CBT and GET.

For example, categories down the left side like "Improves physical activity" and "No" under the CBT and GET categories. And "Improves self-reported fatigue" with "Yes - for some" for CBT and GET. Etc. Or "Long-term improvement" with "No" for CBT and GET. I'd see the data as being formatted to fit on a flyer or double-sided piece of paper (and online/pdf).

And there are studies backing up these claims, including PACE, the Wiborg review of actometer data, etc. They just need to have the data extracted, since the abstracts are pretty useless.

The other thing is that the implementation of CBT and GET could be described ... not as a guide for the doctor to do it, but to explain the actual concepts. A lot of people are pretty shocked when they realize that CBT-for-ME is not real CBT, and amounts to brain-washing, and might be less interested in prescribing it, especially if the lack of data supporting that model is mentioned.

According to NICE, GET is only supposed to be implemented with use of a heart rate monitor, and restricted to milder patients (I think). But even the self-ordained psychobabbler experts pretty much never use heart rate monitors. Yet use of those is going to shut down GET, because most graded exercise simply isn't possible to implement for ME patients within those limitations.

But all of this can be done based on authoritative sources, and would have the potential to prevent the more harmful aspects of CBT and GET, and maybe even help a bit via pacing descriptions.

 

[AndyPR]

According to NICE, GET is only supposed to be implemented with use of a heart rate monitor, and restricted to milder patients (I think). But even the self-ordained psychobabbler experts pretty much never use heart rate monitors. Yet use of those is going to shut down GET, because most graded exercise simply isn't possible to implement for ME patients within those limitations.

But all of this can be done based on authoritative sources, and would have the potential to prevent the more harmful aspects of CBT and GET, and maybe even help a bit via pacing descriptions.

NICE guidelines (for CFS/ME, including GET) are here https://www.nice.org.uk/guidance/cg53/chapter/1-guidance
Last published date 2007

Progressing with GET

1.6.2.17 When the low-intensity exercise can be sustained for 5 days out of 7 (usually accompanied by a reduction in perceived exertion), the duration should be reviewed and increased, if appropriate, by up to 20%. For example, a 5-minute walk becomes 6 minutes, or a person with severe CFS/ME sits up in bed for a longer period, or walks to another room more often. The aim is to reach 30 minutes of low-intensity exercise.

1.6.2.18 When the duration of low-intensity exercise has reached 30 minutes, the intensity of the exercise may be increased gradually up to an aerobic heart rate zone, as assessed individually by a healthcare professional. A rate of 50–70% maximum heart rate is recommended.

1.6.2.19 Exercise intensity should be measured using a heart rate monitor, so that the person knows they are within their target heart rate zone.

Thanks for getting me to look for this, that's helpful information for me

 

[taniaaust1]

For example: 1 - 10
10 best health possible, not time in bed, do full employment, socialise
5 able to spend a few hours out of bed and do very short walk eg 10 metres
1 worst health possible - unable to leave bed, all food brought by another or given via tube
------- something along these lines but validated and tested with patients perhaps calling it the Manchester ME/CFS Physical Function Self-Rating Scale

With that number 5 .. That small example of a scale already many wouldn't fit into eg what about a wheelchair bound ME patient (some can have severe orthostatic intolerance to the point they cant walk with this) but who though spends all their time out of bed. They do exist.

I've met a ME/CFS person before who was using a motorized wheelchair.. couldn't walk but obviously was out of bed or he'd wouldn't have been at the ME/CFS talk I'd gone to (Ive seen a couple of ME/CFS using motorized wheelchairs, still being independent themselves but unable to walk).

As soon as there starts being more then one thing on each line of a scale, Ive personaly found with ME there then starts to become scale conflicts, this is why I think its extremely important that anyone doing a new ME/CFS scale is extremely aware of the range of this patient population or otherwise we just get "another" scale on which some of us don't fit which is just another thing which causes us to feel out of place.

The thing which makes ME/CFS extremely hard to scale as we each may have different symptoms for our more major symptoms with this illness.

In my case its my orthostatic issues which cause me often to have to use a wheelchair and can leave me unable to walk and my the way the ME/CFS affects my memory making it hard for me to function in my life eg forgot to take things off stove, forget to put the bin out etc etc, my sleep issues (affects being able to have any kind of routine) and my chemical issues which give me the biggest probems with this illness.

For many of us, some of our other ME symptoms are far worst then the physical exhaustion/fatigue and scales based on some aspects of this illness but leaving out other severe things a person may have affecting them with this illness in fact can just lead to a further ignorance of our other issues. (I cant see how this issue could be gotten around unless there was a set of scales to be used for different aspects of this illness rather then just one scale).

 

[taniaaust1]

I think this is a terrific idea but I wonder if there's a way of going one further and not just relying on the patient to take the booklet to the GP but the GP to be made aware of the booklet/info and that he/she should be telling the patient about all the things he/she can do to make it possible to access care (home visits, home phlebotomy, side-room with a couch rather than being in the waiting room, use of email, Skype, pharmacy home-delivery of meds, etc.).

It took me years to find out some of this stuff and I found out via other patients or by asking my GP if we could do things like this - my GP never thought to suggest it, probably because he doesn't seem to really get how disabled I am (invisible illness), even though I've spelled it all out for him.

I'm with Sasha on that.. booklet things with info for ME/CFS patients, the GPs need to have them to be giving to the patients. Someone newly diagnosed with ME/CFS just like they don't know where to go for services, they wont know where to go to get a booklet of info on ME/CFS either.

ME/CFS patients have a very hard time seeking out info. A booklet for ME/CFS patients would just another thing the ME/CFS person may not even know is out there for them to access unless their own doctors were telling them, so without the doctors knowing about it first, it would be useless to most).

 

[taniaaust1]

Could the scale used on PR be used as a starting place:

0 - Bedridden constantly
1 - Mostly bedridden
2 - leave house once a week, concentrate 1/hour a day
3 - leave house several times/week, two hours work/activity at home a day
4 - 3 to 4 hours of work/activity a day
5 - four to five hours/activity a day
6 - six to seven hours/activity a day
7 - able to work full-time but with difficulty
8 - near-normal activity level but still symptomatic
9 - normal activity level, mild symptoms
10- fully recovered

I don't fit into that scale either.. I'm only able to leave my house once a week (with support person to push wheelchair), independently, I cant go out at all .. but I can concentrate more then a couple of hours on most days (If its something easy to understand and not hard brain work) sometimes even more then that. I can be at my computer for hours.

So once again there is miss match cause two different ME symptoms got put onto one line of a scale and a person can have their walking severely affected by this illness if they have severe OI with it but have their brain a little better.

I can often do six hours of activity a day if its simply online at computer doing "easy things" (and spend the other 18hrs in bed).. but I'm near bedridden or bedridden some times due to the physical aspects of things. (I cant even sit at times.. use computer laying down in bed at times). I can be unable to sit up but still be able to use a computer in bed.

So where do I fit on this scale? are I a 1 (mostly bedridden due to 18hrs often in bed) or do I rate as a 6?

(Ive heard of bedridden patients still actually working online part time using a computer. I myself couldn't actually "work" as I haven't found an easy online job I could do)

....

Here's a big scale kicker with me.. I can be experiencing only "mild symptoms" if Ive done nothing at all and are doing all the preventative things I can do to stop symptoms eg avoid any chemical exposure, only eat all the things I'm okay with, don't do any activity etc

One research study I was in I think was given a hugely inaccurate impression of my ME/CFS as a questionaire asked if my symptoms had been mild that week.. and cause I had stayed mostly in bed (was taking care not to crash which sends me to hospital at times) so in fact my symptoms had been mild that week. When in truth had I done anything, my symptoms are very severe so that question really just gave a false impression on how I am and how much I can do.

Many of my symptoms only first come in when I'm doing things eg my OI stuff comes in if I'm trying to be physical active and I cant over exert physically unless Ive been doing stuff. If I stay in bed, no OI and no post exertional symptoms.

So its possible to ask me to rate how I felt today and if I stayed in bed, slept whenever I needed too and did nothing and didn't have to think and took all the other precautions to avoid symptoms, I could say 9/10. I may of felt no being dazed, no nausea, no dizziness, no headache etc etc all cause I just didn't get out of bed that day and took great care not to trigger my ME off on the previous days too.

How sick I are is very dependant on how much activity I do among other things .