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

Robert 1973 said:
When is the deadline?
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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.
 
@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.
 
Jonathan Edwards said:
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.
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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.
 
Sean said:
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.
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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.
 
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Jonathan Edwards said:
I was thinking about being more specific about what therapeutic enthusiasms patients and carers need protecting from (diaries etc.).
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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.
 
Felis Catus said:
I was given more time but again, no one seems to understand that 3 weeks is nothing when you are so ill.
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Oh my God, yes. Thanks for highlighting that. One of the reasons I think those who are on income support benefits need to have their 3 monthly reviews changed to 2 yearly as quickly as possible after ME/CFS has been diagnosed because as you described so well above with 3 weeks is nothing, '3 months is nothing' as well.
 
obeat said:
If nurses were involved perhaps it could be recognized by the Royal college of nursing making it an official document.
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what happened to Nurses for ME?
obeat

Thread 'Nurses for ME'

"Susan O Shea is leading the organisation of the Nurses for ME branch of the education working group. The TOR (terms of reference) would be along the same lines as the CMRC education working group and Susan has done a short summary. The idea is that stakeholders are patients and healthcare professionals (more nursing related) and the role is to inform nurses of the biomedical and patient narrative in ME/CFS. This would be via publications, nursing colleges and conferences, online learning and teaching events and also looking at what nurses are currently taught about ME/CFS.

This goes hand...
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I’ve been thinking more about the recommendation that clinics should not prescribe off label outside of controlled trials.

I’m thinking that it might be helpful if the DHSC and the MRC were able to give some sort assurance that such trials would be funded provided the necessary thresholds are met to justify a trial.

It seems conceivable to me that some physicians with an interest in research may be deterred from offering to run an ME/CFS service if they perceive that funding for such trials may meet with resistance – as has been the case with MRC’s approach to funding ME/CFS to date.

I also think Fluge and Mella’s approach to testing drugs for ME/CFS could be highlighted as an example of how things should be done.
 
Robert 1973 said:
I’m thinking that it might be helpful if the DHSC and the MRC were able to give some sort assurance that such trials would be funded provided the necessary thresholds are met to justify a trial.
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We already have assurances like that but of course they are as long as a piece of string. I don't see any way of bucking the system. If someone good has a good idea for a trial they should be able to set it up.
 
Trish said:
I think there should be specialist nurses as the main point of contact for patients, providing a range of ways to communicate including online, phone and home visits.
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Agree. In my experience and what I’ve seen from other conditions those best able to help people navigate the system, remove obstacles, etc. are specialist nurses.

Continuity is key for me too. Being able to build up a relationship, understanding and trust is vital.
 
Jonathan Edwards said:
We already have assurances like that but of course they are as long as a piece of string. I don't see any way of bucking the system. If someone good has a good idea for a trial they should be able to set it up.
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“Should” is doing a lot of heavy lifting there. Who decides if someone is good? Who decides if the idea is good? The same people who have decided not to fund SequenceME? I’m just wondering whether the DHSC could give a more concrete assurance – perhaps specifying certain thresholds. I know you’re not a fan of ring-fencing, but maybe they set up a fund so that researchers can have confidence that the money is there.

If F&M were in the UK I’m not at all confident they would have got MRC funding for their trials. I’m not even confident that physicians in their position would have bothered applying to the MRC, such has been its history with ME/CFS.
 
Kitty said:
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.
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Yes. Yes. Yes.

I just want to get support in a way that doesn’t make me worse. My problem is not that the NHS isn’t making me better it’s that interactions with the NHS have been and continue to be things that make me worse!

I largely mean support for non-ME/CFS healthcare needs to be delivered in a ME/CFS aware way. This is the problem and everything else builds on top of getting that right.

To me the problem is nothing to do with ‘treatments’. We have none. They will come but it will again be about having people to deliver trials and treatment in an ME/CFS aware way.
 
Robert 1973 said:
I’m just wondering whether the DHSC could give a more concrete assurance – perhaps specifying certain thresholds.
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The people involved really have no idea about research. They will just get someone at MRC or NIHR to give a cut and paste answer. We are not dealing with people who understand the problem, so I don't think the strategy can just be based on reason. It has to be based on reality and politics.
 
Jonathan Edwards said:
It has to be based on reality and politics.
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The reality is that a lot of public money is being wasted on salaries for people offering nothing, and the only reason for that is politics. At best it's the "We have to be seen to be doing something" type, and at worst it's the "We have to reduce benefits bill" type.

Ironically, doing nothing at all would probably have saved more on the benefits bill, since 'therapists' would not have been given licence to push so many people into severe illness.
 
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