A thread on what people with ME/CFS need in the way of service

[Hutan]

Would it make sense to sticky this megathread in the resources section so it doesn’t get lost & stale, @Hutan?

Yes, done

 

[Jonathan Edwards]

When is the deadline?

There isn't. I think this may take weeks.

The Austrian document is useful as a source of material. I think it is realistic to have something like that for health professionals to refer to and I suspect that an old-fashioned pamphlet would be most useful - to have in hand when visiting. There is a lot of background justification for procedures that I think can be shortened and made more practical.

I also see that Helen Baxter has produced stuff. I think the scope of this is beginning to emerge.

 

[obeat]

@Jonathan Edwards
I wonder if the service group could commission a hospital passport written by nurses with experience of ME/CFS and knowledge of what is needed in a hospital care situation.

Anything the charities produce is s far too long-winded.

If nurses were involved perhaps it could be recognized by the Royal college of nursing making it an official document.

 

[Sean]

In an interim situation physicians can set up publishable studies, as I did. Using something like daratumumab is not simple. You have to know about plasma cells, otherwise you get the situation we got with rituximab with a mass of uninformed French physicians making the patients hypogammaglobulinaemic so that they got infections. Use of dara should probably be restricted to physicians with good understanding of immunology at least until a formal license is out and I would tend to argue, even after.

I agree with this.

Patients must not let our desperation cloud our judgement and caution. Most long-termers have made that mistake, including me.

Unfortunately it is still being made by some patient support groups and 'patient-led' research.

 

[V.R.T.]

I agree with this.

Patients must not let our desperation cloud our judgement and caution. Most long-termers have made that mistake, including me.

Unfortunately it is still being made by some patient support groups and 'patient-led' research.

I was assuming that there will be at least some private immunologists/rheumatologists who begin providing dara if it is successful in phase 2.

I agree in part but I also think caution must be tempered with an acknowledgement of how urgent this situation is. I think it would be very difficult for me personally to stick to any resolution of not trying daratumumab or any other drug privately after a well run positive phase 2. The circumstances I find myself in are just too extreme and precarious.

And I don't think it's right that someone could die in hospital or from suicide before a drug gets full licencing because their loved ones haven't had the good fortune mine have. But it seems that sort of situation may be unavoidable.

 

[Kitty]

I was thinking about being more specific about what therapeutic enthusiasms patients and carers need protecting from (diaries etc.).

Already been said, but it's worth underlining: the main objective for the nurses is to help stop people getting worse, not to make them better.

Patients know what things make them worse, and nurses should be guided by them. Prioritising each individual's needs might be a good way to start, but as they're severely disabled they'll need accessible ways to communicate. Some might benefit from being able to send information to their nurse piecemeal, as and when they're able—GP practices all have digital portals for patient contact, so this shouldn't be impossible.

New patients (or their carers) might also benefit from being able to brief the nurse in advance of their first appointment.