"Patient's Charter for ME/CFS/PVFS"

Andy

Andy

Senior Member (Voting rights)
I know no more than is presented here.

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Direct link to charter as shown above, https://docs.google.com/document/d/1XVeH6NHhvyCOZov6H0AzORKnPMlR0BKUPilIflVlQ0s/edit

Link from this tweet,
 
Good on them for coming up with the idea. As ever it’s easy to comment from the sidelines but I think it would be a lot more effective in communication if it focused on top priorities - MEAction call to action for MillionsMissing springs to mind

- end to GET
- end to FII cases against families
- biomedical research funding
- medical education
 
I think the Chronic Collaboration is the organisation set up by Steve Topple and his partner just before they organised a small demonstration outside NICE offices recently. I don't know any more about whether they have other members or structure.
A quick google search found this very short video:
Code: 
https://www.youtube.com/watch?v=CuL6ku8SfNw
 
NelliePledge said:
Good on them for coming up with the idea. As ever it’s easy to comment from the sidelines but I think it would be a lot more effective in communication if it focused on top priorities - MEAction call to action for MillionsMissing springs to mind

- end to GET
- end to FII cases against families
- biomedical research funding
- medical education
Click to expand...
I think that meticulous recording of patients' worsening of symptoms following treatment is also vital to include. Lack of this is one of the key reasons the BPS people feel so enabled to be able to talk about apparent successes, without any recording of contrary effects of treatment to counter that. Until that is required, and identified as a requirement, then the problem will continue, and the mindset will persist that such an eventuality does not exist.
 
Well i'm all for most of it, & great to use cognitive dysfunction instead of 'fog'.... but do we have proof of 'tissue hypoxia' or 'brain inflammation'? AFAIK they are just as unproven/poor quality studies as the CBT/GET dross.
I do wish people would stop making these unproven biomedical claims, it discredits us. And whats good for the goose is good for the gander. its hypocritical to complain about unproven psych theories if you promote unproven bio theories.
 
Barry said:
I think that meticulous recording of patients' worsening of symptoms following treatment is also vital to include. Lack of this is one of the key reasons the BPS people feel so enabled to be able to talk about apparent successes, without any recording of contrary effects of treatment to counter that. Until that is required, and identified as a requirement, then the problem will continue, and the mindset will persist that such an eventuality does not exist.
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Yes good point.
 
Barry said:
I think that meticulous recording of patients' worsening of symptoms following treatment is also vital to include. Lack of this is one of the key reasons the BPS people feel so enabled to be able to talk about apparent successes, without any recording of contrary effects of treatment to counter that. Until that is required, and identified as a requirement, then the problem will continue, and the mindset will persist that such an eventuality does not exist.
Click to expand...
This is key, is there any general agreement over how that should be measured?
 
Haveyoutriedyoga said:
This is key, is there any general agreement over how that should be measured?
Click to expand...

One of the things we need to include is a full picture of the impact of treatment on our lives.

We've all cut activities out when we've been feeling worse, and often they're things we'd never think to mention to a doctor: fewer phone calls to friends and family, not vacuuming for ages, stopping doing the crossword, changing what we eat to things that are easier to prepare. We economise on our energy expenditure without even being aware of it half the time, and find ourselves putting up with rather worse sleep or pain or dizziness as part of our "normal", but it can all add up to a major deterioration in quality of life, especially when it's sustained for months at a time.

This is a shared responsibility between doctor and patient, but the doctor has to make provision for it to be recorded; has to recognise the impact on the patient's life. Just as they would if they prescribed a drug for high blood pressure or migraine or whatever, and it made the patient vomit every time they took it. It's no reflection on the doctor's professional competence or the patient's willingness to comply – it just means that treatment isn't right for that patient.

This, though, depends on a normalised working relationship between doctor and patient. An assumption of trust and goodwill on both sides, as there would be if you'd turned up at the surgery with symptoms of pretty much anything except ME. That's the bit I really don't know how to solve.
 
Although ideally we need research with objective outcomes, electronic activity monitoring, heart rate, etc, realistically in the short term, until there are agreed biomarkers questionnaires will also still be used. Consequent we need agreed symptom lists/symptom profiles and self rating scales thar are relevant to patients’ experience rather than researchers’ (indeed mainly BPS researchers) preconceptions.
 
Peter Trewhitt said:
Although ideally we need research with objective outcomes, electronic activity monitoring, heart rate, etc, realistically in the short term, until there are agreed biomarkers questionnaires will also still be used. Consequent we need agreed symptom lists/symptom profiles and self rating scales thar are relevant to patients’ experience rather than researchers’ (indeed mainly BPS researchers) preconceptions.
Click to expand...
I've yet to find a questionnaire that I've related to and as I understand it the rest of the ME community have thoroughly reviewed all of the ones applied to us and felt the same, does there happen to be one single review or source of information on the range of questionnaires we get prescribed and their pros/cons?

The electronic activity monitoring would be great, I think HR monitoring is being studied by some long covid researchers now, in addition to studies by workwell etc., I found HR monitoring enormously validating.
 
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