MrMagoo
Senior Member (Voting Rights)
I think we need to talk with people in relevant groups, some are on here aren’t they?
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New Forum Software Installed (Still a few issues but reopening the forum) More details.
The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app
Lou B Lou
Senior Member (Voting Rights)
@bobbler wrote (I think) ..... "it is now some end goal that is evidence merely by the belief of Pete Gladwell, BACME and those who've sucked up the bigotry put out to believe ME/CFS has an element of 'you can better yourself despite us not offering any medical treatment'.... "
That is the objective - to appeal to NHS personnel, physios/OTs/clinics.
The overall objective is for PROMS/APP to sideline and replace NICE compliance in the NHS.
So there's still jobs for the physio/OT/Psyche boys and girls, they can maintain a belief they are 'helping', not rock the NHS boat, and keep BACME in control.
No medicine needed, according to the BACME model.
.
That is the objective - to appeal to NHS personnel, physios/OTs/clinics.
The overall objective is for PROMS/APP to sideline and replace NICE compliance in the NHS.
So there's still jobs for the physio/OT/Psyche boys and girls, they can maintain a belief they are 'helping', not rock the NHS boat, and keep BACME in control.
No medicine needed, according to the BACME model.
.
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MrMagoo
Senior Member (Voting Rights)
They will sell it as “delivering more, with less” it will free up OTs to do proper work with people in clinics, whilst just replying to the odd question/pulling some stats off the app.
I was told my local service receives funding for10% of the patients they see, hence all the online group appointments many ME services run.
Underfunded and oversubscribed ME clinics with no real outcome measures, the app will seem like a gift to the ICBs.
There is a fly in the ointment though. Visible exists and it couldn’t be more different. Lots of the community are already keen on it and using it.
I have everything crossed that the limited genetics in Decode ME turns up something which can find funding to be further explored .
Otherwise this looks like a complete ****show .
But nothing seems to be .
Guidelines have had lip service ( aka rebadging ) since adopted .
It's a governmental thing .
We're not paying for a private app we will devise our l own. Control and money.
Scottish government is doing exactly the same thing with energy efficiency for buildings. There's a methodology which is proven for where they want to go , but they won't adopt it . Have to make their own version .
Nuts .
Suffolkres
Senior Member (Voting Rights)
Called back by Proff Paul O'Brien.
Very helpful.
- A seminar with questions permitted during and after.
- Seminar, mainly aimed at Clinical staff involved with LC.
- Suggests it's all NICE compliant ( for which ever condition..!) Fibro. ME...etc
- I specifically mention CYP matters especially 18-25 year olds re Education and Health Care Plan difficulties, SEND and Alternative Provision ( I said, my specific professional interest) though also a long term carer.
- I mentioned the NHSE Magic money tree for LC drying up
- Plus the FOI data base by LC charity indicating ICBs pulling services
- Mentioned S and Mid Essex Herts recent pull plus NW London...
- He revealed he is Essex based and used to be with Essex CC....
- Mentioned challenging times, 10 year NHS Plan, plus ICB reorganisation and need for new Governance from July....
- Mentioned I was both NICE Stakeholder and DHSC involvement
- Mentioned DHSCDelivery Plan imminent Launch..
- He said he could foresee no new ££££ to come from it and disappointment anticipated
- I said things looked bleak for the foreseeable future, though our area hoped to deliver some positive news re service provision soon....
22nd May utube Matthew Taylor on Mobilisation interesting!
It was announced in public it was offered to the Suffolk GP Federation who are programmed to start in August.
Lots to do before final contract is signed possibly July. Final Spec and Pathway agreed also.
Our lovely, feisty 2022-2024 Transformation Manager hero has been shortlisted for our SNEE Expo Awards for Coproduction. Hurrah!
But she, like us are currently excluded from any involvement of this mobilisation phase..Don't ask! WIP.....
But we are getting there here in windy cool Suffolk!
We live in interesting times and await the Press releases soon, for finer detail as to lead clinician and researcher.
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@Russell Fleming is a member here. Russell, can you explain how the MEA has ended up in the middle of this mess, associating with people with a history of not understanding ME/CFS and causing harm, promoting pacing up? Has the MEA learned nothing from the history of AfME's involvement in the DWP funded PACE Trial?
I can't see AfME getting involved in trying to limit the harm of this initiative. For one thing, they are busy, with DecodeME and with what comes next, with their new website and associated services. For another thing, tackling the MEA would probably be seen by AfME decision makers as 'too negative'. For sure, actions that can be seen as squabbling among patient charities are unedifying and won't win influential friends. It wasn't so long ago that AfME was championing Gladwell's material. I doubt that AfME will want to tackle government agencies in any strenuous way either - it's not how they work.
I wouldn't be surprised if the ME/CFS Delivery Plan comes out in the middle of all this - with the government taking advantage of publicity around DecodeME results, and this new app a central part of the 'look, we are doing something!' message.
Barring Charles Shepherd or someone else who is influential in the MEA seeing sense and taking some action, or a major change in the MEA Trustees, I can't see much offering even momentary resistance to the steam roller that this initiative is. I think MEA members should be looking hard at mechanisms to improve the quality of that charity's governance. I forget, are the MEA Trustees elected? The current trustees have not only endorsed this initiative, they have funded part of it.
Possibly, having influential journalists quoting those Bristol clinic outcome results and asking the question of why someone responsible for those poor outcomes now seems to be in the driving seat of this initiative might have some effect. But the reason for the opposition is quite difficult to explain. Many people hearing about it might think 'do they not want to get well?', 'isn't having goals a good thing', 'isn't it good for the clinicians to have more information about the person'?
I find it really hard to understand why Gladwell has been received so well by the UK's two leading ME/CFS charities. Anyone with experience of ME/CFS and some sense should be able to see that his knowledge of ME/CFS is shallow and his preferred approaches are ineffective, time wasting and patronising.
Link to primary source (MEAction report): Your experience of me services
page 51 is the graph with Bristol the tenth bar down (and a long bar as it had a lot of respondents)
it's looking increasingly likely that the DHSC delivery plan release will be timed to have its questionable "delivery" out amidst what will doubtless be a big organised news story around DecodeME. It , to me, seems also that the DHSC delivery plan became a talking shop tool - whether Sajid Javid was "in on it" or not - to fill time after the PSP and placate patients 2022 - 2025 until DecodeME published, with the Medical research council resolved To do nothing until it’s completed. Most likely, genetics round 2 will be the next focus.
I don't see how the MEAs promoting the app , to serve its need in beta phase to show it's gotten feedback from the patient community, isn't from a position of trying to support this app, which, along with the nhs training modules and some rather questionable plans for medical school education will be, Afaics from what's being said about no plans to put in any investment, held up as "the fruits" of 3 years of talks. Just enough to be something to put in the newspapers along with DecodeME but nowhere near meeting patient need.
What will be interesting is how the main 2 charities respond to DHSC delivery plan publicly , if it is mainly this, will they present it as good but also disappointing regarding lack of funding, I can't see them taking a stronger line, although probably it won't reflect what more informed / in need patients feel. The government have somewhat managed expectations, particularly sending out a letter to the MEA for the 12th of May. The charities have done several collaborations now since 1998 and won't see it, or want to present it , as led a merry dance with deliberate dawdling and miserable offerings occasionally to prevent all out mutiny, which is how I see it. I'm guessing it will be received as mixed bag but with welcome of increased awareness, education and "support".
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Sasha
Senior Member (Voting Rights)
Our charities seem to go through phases, and in the bigger ones, there seems to be a constant bubbling up of BPS stuff while at the same time, the charities are promoting bioscience and trying to get it funded. That suggests to me a mix of different people holding different views. How much in the ascendant the BPS stuff is seems to vary over time, so I wouldn't give up on the MEA as a lost cause - particularly since what it does affects us all.
I think the question is how to challenge them effectively. Doing that from the outside seems less effective than from within.
tornandfrayed
Senior Member (Voting Rights)
Moved post
What fresh hell is this? ME Association promoting an app sponsored by the DWP and the DHSC for people with LC, ME/CFS, FM etc. -
https://twitter.com/user/status/1929516830806130908
What fresh hell is this? ME Association promoting an app sponsored by the DWP and the DHSC for people with LC, ME/CFS, FM etc. -
https://twitter.com/user/status/1929516830806130908
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Suffolkres
Senior Member (Voting Rights)
!!!!PS. I confused professor O'Brien with someone else at ELAROS who worked at BT Labs...
He said he was Essex.
I am an Essex gal......
I have trackeddisastrous ME provision in Essex (satellite of Barts)....
......
https://www.linkedin.com/in/profess...ia&utm_content=profile&utm_medium=android_app
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Kitty
Senior Member (Voting Rights)
It'll be interesting to see what happens if there are clues in the genetics that give us genuinely promising research targets.
It could be a great opportunity for the MEA to realign with science. Leave all the Gladwell et al nonsense behind.
Or they could put all their efforts into blurring the edges enough to make it look as if they've reconciled the two. Trying to ride two horses with one arse, as my dad would have put it.
Summing up my understanding of the situation so far with this app.
Who is producing the app.
The Open-OH app is being developed by a private company called Elaros in conjunction with clinicians from Leeds who run their LC services, and funding from the DWP and DHSS.
Content of the app:
The app so far has, for LC, PVFS, FM and ME/CFS:
3 questionnaires for participants to fill in as and when they want to with data recorded. The questionnaires are one for LC, one for FM and the Chalder one for fatigue, presumably intended to be relevant to all 4 conditions.
Facility for patients to record personal data on symptoms, activities, diet etc as and when they want to that is recorded.
The patient data to be accessible to the patient's clinicians and possibly in anonymised form to researchers, including government bodies? There is a lengthy data privacy policy for participants to read, and tick that they agree to before being able to use the appl.
There is a significant amount of advisory material on each condition, including activity management/pacing, descriptions of the conditions including PEM, and advice for clinicians, employers.
The material on PVFS includes the advice to pace to avoid PEM, BUT it advises pacing-up, baselines, diary keeping, increasing activity after only a week of stability etc.
The information on ME/CFS comes straight from BACME. I haven't read it all yet.
Beta testing feedback and access to the app
The app is still in development, with more to be added including more questionnaires/PROMs.
The app developers have invited feedback and questions.
The ME Association has publicised this beta testing on Facebook, saying they are not recommending it, but informing people that they can participate.
The app is available in app stores for anyone to use. It includes the option of providing feedback to the developers.
ME Association, the MEA/Tyson clinical toolkit and PROMs involvement.
This is where it becomes unclear to me. So far, as far as I know, none of the MEA funded Tyson project materials are on the app, nor did I see any explicit mention of MEA or this project involvement with the app, but they have both presented at meetings, and there's another one in July.
There is an assumption among us on this forum that the intention is for the Tyson materials to become part of the app? Do we have direct proof of this?
Edit: We do have proof of intention to put the MEA materials on the Elaros platform from a February 2025 webinar, apologies for missing that:
https://www.s4me.info/threads/the-e...cale-and-open-oh-app.39324/page-9#post-615090
Who is producing the app.
The Open-OH app is being developed by a private company called Elaros in conjunction with clinicians from Leeds who run their LC services, and funding from the DWP and DHSS.
Content of the app:
The app so far has, for LC, PVFS, FM and ME/CFS:
3 questionnaires for participants to fill in as and when they want to with data recorded. The questionnaires are one for LC, one for FM and the Chalder one for fatigue, presumably intended to be relevant to all 4 conditions.
Facility for patients to record personal data on symptoms, activities, diet etc as and when they want to that is recorded.
The patient data to be accessible to the patient's clinicians and possibly in anonymised form to researchers, including government bodies? There is a lengthy data privacy policy for participants to read, and tick that they agree to before being able to use the appl.
There is a significant amount of advisory material on each condition, including activity management/pacing, descriptions of the conditions including PEM, and advice for clinicians, employers.
The material on PVFS includes the advice to pace to avoid PEM, BUT it advises pacing-up, baselines, diary keeping, increasing activity after only a week of stability etc.
The information on ME/CFS comes straight from BACME. I haven't read it all yet.
Beta testing feedback and access to the app
The app is still in development, with more to be added including more questionnaires/PROMs.
The app developers have invited feedback and questions.
The ME Association has publicised this beta testing on Facebook, saying they are not recommending it, but informing people that they can participate.
The app is available in app stores for anyone to use. It includes the option of providing feedback to the developers.
ME Association, the MEA/Tyson clinical toolkit and PROMs involvement.
This is where it becomes unclear to me. So far, as far as I know, none of the MEA funded Tyson project materials are on the app, nor did I see any explicit mention of MEA or this project involvement with the app, but they have both presented at meetings, and there's another one in July.
There is an assumption among us on this forum that the intention is for the Tyson materials to become part of the app? Do we have direct proof of this?
Edit: We do have proof of intention to put the MEA materials on the Elaros platform from a February 2025 webinar, apologies for missing that:
https://www.s4me.info/threads/the-e...cale-and-open-oh-app.39324/page-9#post-615090
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tornandfrayed
Senior Member (Voting Rights)
Oops. This came as a shock to me because either I managed to miss this entirely or I did know and forgot, which is easily possible. Is it related to the PROM and Tyson and Gladwell? Don't bother answering. I'll read back up on it when I'm able.
From earlier on this thread:
I think it's worth copying the information again here:
Webinar:
Quote:
Wednesday, July 2
Integrating ME/CFS and Long Covid Specialist Services
Attend to hear about advances in clinical practice, research, and support for people with ME/CFS at home from a range of speakers
By ELAROS 24/7 Ltd
Date and time
Wednesday, July 2 · 1 - 3pm GMT+1
Location
Online
About this event
- Event lasts 2 hours
This event will be recorded. Please email c19-yrs@elaros.com for a copy of the recording if you are unable to attend on the day.
Long Covid and ME/CFS share similar characteristics and have a similar impact on an individual’s ability to function normally. Infections are regarded as the triggers to these chronic medical conditions that certain individuals have difficultly recovering from.
In the absence of approved and effective treatments for either condition, management is the main tool we have to work towards a stabilising of symptom frequency and severity and an improvement in an individual’s life quality. It is essential that affected individuals are referred to a multi-disciplinary specialist team who can confirm a diagnosis, provide tailored care and support based on need, and advise on the tools necessary to manage health effectively.
The NICE Guideline (NG206) provides evidence-based clinical recommendations for the diagnosis and management of ME/CFS that can be applied to Long Covid where individuals whose difficulties stem from a Covid-19 infection meet the criteria for ME/CFS. We await final publication of NG188, the clinical guideline for Long Covid, last updated in January 2024.
Integration is being promoted because of a need to retain specialist clinicians and build provision for a larger patient community. We need to meet demand for early and accurate diagnosis and effective management for those with ‘infection associated chronic conditions.’ In areas where there is no ME/CFS service it represents an opportunity to provide essential support, likewise in areas where continued Long Covid provision is in doubt or where clinics have closed. In areas where provision is likely to continue, it presents an opportunity to bring specialists together under a new service structure that aims to improve health outcomes for more people.
This webinar will bring front-line clinicians together to share their own experiences of service provision, to discuss the future of integrated services for ‘infection associated chronic conditions’ and to hear how development leads and commissioners have overcome local challenges, involved patient representatives, will monitor health outcomes, and other factors that have played a role in the design (and launch) of integrated services.
Our speakers:
ME Association will share progress on the development of a new clinical assessment toolkit for PwME in collaboration with University of Manchester, alongside a range of options to make the toolkit and various support resources digitally accessible for both clinicians and patients. MEA will also provide an overview of progress being made on the integration of specialist services across the United Kingdom.
The digital health technology provider, ELAROS, will demonstrate two solutions to support PwME directly at home and in clinic with the support from NHS services, building on their specialist Long Covid platform recommended by NHS England and NHS Scotland.
We will be joined by a range of clinical service representatives from England and Wales to demonstrate advances being made in the integration of specialist ME/CFS and Long Covid services with other conditions, and to present some of the challenges and opportunities of undertaking this work.
Claire Jones, Consultant Therapist at Betsi Cadwaladr University Health Board’s Living Well Service, will share their progress to introduce an integrated service to support Long Covid and other infection-related chronic conditions, ME/CFS and Functional Neurological Disorder.
Claire Corbett, Head of Cancer and Long Term Conditions at Suffolk and North East Essex Integrated Care Board will present on the ICB’s work to develop a service specification for the Suffolk and North East Essex Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and Long Covid Service over the next 3-5 years.
Our webinar will be chaired by a special guest speaker to be announced soon.
Finally, additional breakout sessions will be delivered by representatives from several clinical societies and charities in ME/CFS and Long Covid.
___________________________
The above event is intended for professionals. I have just registered and had to provide my organisation and role, so I put Science for ME international forum and my role as committee member. I wonder whether that will pass muster as a professional. All I have to do now is remember to watch it.