Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

My understanding is that in people with ME there is a switch from aerobic to anaerobic metabolism of glucose at a much lower level of energy expenditure.
For each molecule of glucose metabolised anaerobically, ie to make lactic acid, 2 molecules of ATP are produced, rather than 30 something molecules if the system is working aerobically, ie has enough oxygen and no "blocks" in the pathway.

So it's not surprising PwME run out of energy.

The terms used here are not synonymous with the general understanding of aerobic exercise in a fit, healthy person.

 

Thanks Natalie. We had an event on the 11th September where ME and CFS training was on the agenda.
I heard late in the day from Shelley Mitchell, (below), that "it was actually the CCG that had changed the agenda for the 15 session and talk.
It didn't happen as planned, but was still very worthwhile and it was a firm foot in the door....;

Resources GP Awareness (referenced in paper to CCG September 1st 2019)
http://nandsme.blogspot.com/p/blog-page_23.html
(During meetings with Suffolk Commissioning it was agreed that the Patient / Carer Group would prepare information for GP's to raise awareness regarding ME & CFS in our region. Clinical advice was kindly provided by Professor Jonathan Edwards.)

but I was able to attend and did a stall with training materials prepared for GPs etc.We want to build this as a web based resource.
ME and CFS is on the local programme and 10 year NHS plan being discussed at CCG Governing Body/STP Alliance level too.


I am either hoping that it will be re booked, or that we coordinate an event with Suffolk CCG (and N Essex) Alliance that is a dedicated event- As we have links with LSHTM and Suffolk patients are part of their CureME Biobank research, that would make sense. If it were one of their 15-20 minutes sessions, your videos would be perfect.

I have already applied for funding for an event/the event in advance!!!
I think it would be good to be inclusive here and keep each other in the loop?

Re, "I will need to collect feedback on the project and evidence of it reaching people and being useful - to comply with the award requirements and be able to receive the final proportion of the award!"
You can use any of the info I provide to give feedback to Wellcome? I am happy to write something up if you wish, I also need to do this to get my funding bid successfully too??!

Additionally, we have a new Medical School in Ipswich at University Campus Suffolk who may also be interested ...... (everbrite etc).
There is also Social Care Department which I have had involvement with re ME where I was invited to give a talk to trainee sw (2016 on the back of the APPG Report Barriers to Social care).

My contact that you can use to give feedback to Wellcome;

Shelley Mitchell
One Clinical Community Officer
NHS Ipswich and East Suffolk Clinical Commissioning Group
01473 770021
shelley.mitchell@ipswichandeastsuffolkccg.nhs.uk

PS. WE sat next to each other at the NICE Scoping Event- but there was little time to network other than to sense of being amongst friends in adversity!
I was the one who asked Peter Barry the awkward question at the start.....! I believe he replied, " Ah, I know where this is going......!"

 

The project as a whole, or most of it, is to be shown on those sites. It is not ready to be put there yet, because it isn't made! - although MERUK may possibly put these GET ones up before too long... I didn't really want the GET videos up without other videos giving a better sense of the project overall, but it seemed important to get the GET videos accessible as soon as possible. I need to get on with the rough editing as a priority - it is difficult fitting things around being a carer, and Josh is very, very tied up at the moment. We made a real effort to get them finished last week. I explained in a previous post about not having them on youtube, both for the sake of patients included in the other videos and because it is a project which is funded by a Wellcome award and I need to comply with the proposal that was accepted by them.

 

Ah, yes! I remember. Please can you sen me your email address by using the website form, though. It only goes to me. I'd rather email, as I don't generally have time to use this forum much. You can certainly use any videos we have that are finished and suitable for what you want to do. That would be great. Thank you.

 

Will do. Thanks!

 

not meant as any kind of criticism ( I am a huge 'fan' of Vfts ).
How are you 'promoting' these current videos and the project as a whole? Are the ME charities aware of them (other than MERUK and CureME)?
I would think Nina Muirhead would be someone to contact (re training).
I just worry that as with Vfts (for a long time), that they might not get the kind of exposure they deserve.

(I somehow managed to miss this thread and only found out about them yesterday, could not view them on my 'ancient' PC and went through much jiggary pokery with a small tablet in order to watch them. I would otherwise gladly be offering to do a transcript if needed).

 

We would be happy to upload these to our GP Training Resource page and material?

GP Awareness
http://nandsme.blogspot.com/p/blog-page_23.html

1. It could go with a statement that this is a "trailer"/ "preview to the bigger project. It will be superceded as and when.
2. It would nip in the bud the CCGG Alliances ,

"we are waiting for NICE" publication conundrum!'

3. And send a warning (together with our 600 member complaint) about direction of travel and "do no harm" in Waveney and Norfolk (NB Suffolk are ok).
Norfolk alliancehas planned to incorporate CBT and blur the distinction between mental health/ Fatigue and ME patients

 

MEA do not seem interested. I contacted CS about being filmed, a couple of times, but had a very unenthusiastic response - very busy - and I emailed the charity to tell them about the project when I was awarded the funding. I am working with Nina who we have been to film and is in different sections of the project, as well as talking to her about training material. I find it difficult to do so many aspects of things myself. I am a carer and at the time of getting Voices out was dealing with my father's death and posting out all the videos and answering queries myself. For now my priority is actually making the project. We had to finish these two videos for the Belfast conference and them it seemed important to make them publicly available, but I would rather not have started with GET. The Introductory video would have been a better one to have finished first, to start to get a better overall context. However, we can only do things in the order them become possible and the Workwell team and Brian Hughes have been so extraordinarily helpful those videos were easiest to get on with. The quality on Vimeo can be reduced, use the cogwheel symbol, to make them easier to watch on less powerful equipment. I have a transcript, though I'd have to check I've added the last changes. I keep transcripts adjusted as I'm working on the videos. Josh has just added sharing permissions for MERUK, Hope 4 ME& Fibro and Workwell. Workwell will be sending out eblasts as the videos are released, so I expect as usual with my projects they will get more notice in the US and NI! And Japan for Voices. I think it made more of an impact there than anywhere else! because charities used it to fight with.) The Dialogues project is specifically a website which will have both videos and links to other existing material. The video's can't just be separated out from the project as a whole, but need to be kept with the project and its attribution to Wellcome.

 

That's truly shocking.

 

which is what they should have done here; I'm guessing that one of the reasons they jumped on the Unrest bandwagon is because it is not UK focussed, and there is no direct criticism of what has been going on here over the last couple of decades. Such a missed opportunity by the UK charities.

At least Voices is being more widely viewed now, although I still think it is largely only by people in the community.

Really pleased that Nina is getting involved in the new project.
It is clearly a huge undertaking for you both and I really appreciate all that you are doing/have done.

Hope that we, as a community, can help in any way possible to make it a real success.

 

Transcript of part one
by a non native speaker
please feel free to point out all my mistakes.

 

Transcript of part two.
Please see end of document for screenshots of the graphs.

 

I am so impressed with these videos. Great quality, clear and I can’t wait to see the others. I think they will so useful for us to easily share with health professionals in various situations when we are under pressure/misunderstood.

Must admit to tearing up a little at video one: “is deconditioning a problem, yes. Is reconditioning possible. No” (or words to that effect). I think this needed saying.

I feel like such a failure that I cannot even keep my muscles at a better level by isometric movements and small efforts long term. I keep trying but it is much harder than I expect to keep doing it (on top of already stretched resources for necessary activity like washing, eating etc), to remember, to not do too much, to judge that and implement it on my own. I am watching a slow decline, but feel powerless to change that and there’s no real support or trustworthy help and advice.

 

So sorry to hear of your loss, and sympathies over the pressure you are under; it makes the project all the more special and powerful.

 

This really resonates with me. I have deliberately made sure that I walk (the dog) as much as I can (its not much), just because my muscle mass measurement between visits 1 and 2 to U.K. ME/CFS Biobank had worsened. I wonder whether it is the difference between a ‘summer season’ and a ‘winter season’ (not as able/inclined to walk in the colder/wetter months). We will see how that goes after visit #3 in October.

“watching a slow decline” -
definitely feeling older than my years,
struggling more than I did even a year ago and
sad when I compare my physical situation with my friends of a similar age.

 

I second that.

I am also very sad.
I realise CS is pulled in many different ways and really appreciate all the work and efforts he continues to make for the ME community just as he has done for so many years. Like my post above, he is probably desperate for others to take up the baton, so that he can just slow down a bit and relax (and that would be well deserved).

@Russell Fleming
Please would you seek some reassurances from MEA that links and recommendations for “Dialogues” will be made by our main ME charity in the U.K. ?

If Dr Charles would be willing to reconsider and film a brief introduction of some sort, I feel that this would have such a huge impact on raising much deserved recognition for this project. With Dr Nina involved and the Biobank, this website is, afterall, going to be a major U.K. educational tool.

 

Thanks. Do please do that. I haven't looked at this site for a couple of days as I became a Granny on Sunday night!!!!! Sonya C has told me that she has "circulated [ the GET videos] to all our trustees and staff. I have also included the links to the films in our revised induction plans so they will be seen by all who work as part of our team as I think they clearly identify the issues with GET and PACE." I haven't specifically sent the links to the 25% Group yet.... they are very supportive of my projects.