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

I know no more than is presented here.



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

Link from this tweet,
https://twitter.com/user/status/1445837234435883008

 

Yes...well.

I can really see that lot happening.

 

This charter would be a great idea, if it was 5 items instead of 25 and had demonstratably broad support from the patient community.

 

The ME Carta?

 

But we don’t want a MEGA Carta.

 

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.

 

Myalgia Carta?

 

Or a GET Carta.

 

One of my few brushes with ‘celebrity’ was meeting the family that the gangsters in Get Carter were later based on. That was back in the day when Spain sheltered people wanted in the UK.

 

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.

 

This is key, is there any general agreement over how that should be measured?

 

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.

 

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.

 

If there is no one place where the usual questionnaires are critiqued then I may find the time to collate what I find.