The HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE)

Given that I would be replying to the exact same mailbox, it implies that a member of the study team will still be reviewing each email, and I would like to think that they might identify a request to withdraw from the study as something that doesn't need to be repeated. So I will be waiting a week to see if this is the case or not.
 
Andy said:
Given that I would be replying to the exact same mailbox, it implies that a member of the study team will still be reviewing each email, and I would like to think that they might identify a request to withdraw from the study as something that doesn't need to be repeated. So I will be waiting a week to see if this is the case or not.
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I would have been tempted to be a bit belt and braces and reply.

Especially since they keep emailing you with the same thing repeatedly.

Apologies, I did suggest that I might help Trish write a draft complaint but life went crazy this week.
 
Andy said:
Given that I would be replying to the exact same mailbox, it implies that a member of the study team will still be reviewing each email, and I would like to think that they might identify a request to withdraw from the study as something that doesn't need to be repeated. So I will be waiting a week to see if this is the case or not.
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Received this response this afternoon,
Thank you for your email. I am sorry to hear that your experience of the study and the AUTONOM-E reminders has been frustrating. I can confirm that we will process your request to withdraw from the HERITAGE study and will ensure that no further study-related communications are sent to you.
Thank you also for taking the time to provide such detailed feedback. We genuinely appreciate you highlighting these concerns. As a research team, we acknowledge the points you have raised and apologise for the inconvenience and frustration caused. We are aware of a number of the issues you have identified and are actively working with our partners to address them and improve the participant experience as quickly as possible.
We value feedback from participants and patient contributors, and your comments will be shared with the wider study team as part of this ongoing work.
Thank you for the time and effort you have already contributed to the study, and we wish you all the best.
Kind regards,
HERITAGE Study Team
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Not sure how much I believe "We value feedback from participants and patient contributors..." but at least they acknowledged my participation withdrawal promptly and will wait to see if this stops the daily spam from AUTONOM-E.
 
NelliePledge said:
In these circumstances it doesn’t seem appropriate to have a response signed off from an impersonal team name I think that contributes to scepticism about the extent to which they actually value feedback.
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Yes, that thought did occur to me as well, though I could understand someone who actually deals with the emails, as opposed to those in senior positions in the study team, not wanting to reveal that they are connected with the study.
 
I feel so saddened by this and the way it feels it’s been imposed.

I’m apalled that after the nice guidelines analysis we’ve got a bunch of people daring to use the 12 month outcome measure in me/cfs and not a longer timeframe

I can see the sleight of hand here - they’ve used taking on covid patients who will recover a lot of them in 6months and 12mknths

I think really it isn’t properly me/cfs until it’s over 12months

And yet they are then taking that group many of whom might be past the 3yr window by the time they get diagnosed because of the nature of the condition and so in that group it’s 5% recovery rate

And who are they diagnosing with it and how early on? And of that 250 are they going to have the gall to then impose that externally invalid to the rest of the existing me/cfs population who got harmed for over a decade with the same crap and use it to put them thru the same dystopia again?

Basically due a Paul garner of ‘look he recovered after 6months, so why have you not even though you’d been out through this crap so many times over over so many years and it harmed you each time’ fallacy

I think we need to all who are in advocacy be reading the pitch for this project to note how they are using the exact stuff that is being pitched by certain speeches ‘for us’ of ‘burden to the economy to £x’ etc

And note that it’s being used by those who might not be seeking to make us medically well just potentially doing the change the measures and change the people recruited to get the claims they want ‘evidenced’ poorly. Whilst claiming to be genuinely interested in testing things are working to improve them - well what is being measured is then what matters to them and its DPROMS

Sorry if I’m late to the party on this thread but is there any comfort those who’ve been reading this thread longer can point me to on this?

It’s all nightmarish really. It feels like that’s no one caring what I’ve been put thru and no intention to make things any different and there’s a humanity thing going on there too afterctgereve been too many points where you think people actually must/do know what they are doing and that it’s been done to some so much for so many years and took all access to life and ostracised them from everything for so many years, to be a part of keeping up that distortion and not giving us a break eventually so we have some peace in a lifetime even if we never get our bodies back or apologies for the irreparable damage and lives destroyed of us and our families.

To see this be mentioned as the solution and the list of people it just got taken by or handed over to - who did that? How did all this get arranged with all the deals to eg have MEA recruiting for it etc?
 
Trish said:
Work Package 1 (WP1): Use our existing digital platform to collect data on how ME/CFS and Long COVID are diagnosed by healthcare professionals, their symptoms and how much the two conditions overlap and affect people over time
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Trish said:
WP2: Compare the costs and effectiveness of the different existing service models in terms of integration between Long COVID and ME/CFS clinics (including comparing with healthcare, economic and societal costs in a separate UK-wide group having no access to specialist clinics).
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Trish said:
WP3: Talk to patients, healthcare workers, and other stakeholders to understand what's working well and what needs to change, and how to address systemic barriers of stigma, disbelief, race, culture and social deprivation.
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Isn’t this the opposite of what needs to be done and some of this just I’m afraid looks at gerrymandering by rearranging how we get categorised to remove the severity of any symptoms or level of overall disability and removing info on prognosis YET AGAIN for me/cfs

The one thing any bystsnder wouldn’t even hear us clearly if we said (and assume we got it wrong - it would be a come again moment) somehow the nhs system dodged capturing even by default by using terror and harmful bps treatment to prevent pwme from returning to GPs whilst telling said GP that it was short lived or got cured and if patients didn’t return to mention it then it should be removed as if it lasted a few years and if they did say they still had it and it made them worse to send them back for more

And now this wants to ignore collecting the most important thing of how long someone has had it

This is just MUS being forcibly imposed over the last remaining bit of a medical condition

To turn both into ‘symptoms’ treated as if they were in healthy people and ethical harming the overall illness

Done during 12mknths time period where patients are vulnerable and having to report to employers and gps that they are trying hard and progressing to keep roofs over their heads even if it’s not working. And if they get a lot iller they can’t complete. The same old trickery.

No sign of any intention for these flaws that couldn’t have been underlined more in the Nicd analysis just embedded further into the methodology to warp the existence and identity of a condition.

Claiming to look at ‘cost effectiveness’ of a clinic whilst not caring about health outcomes - it’s not healthcare where they are responsible for not doing harm and reporting in safety like any other health dept must. Just who can ‘deal with us’ on the cheapest promise.

No it doesn’t have to be delivering ‘care’ or ‘health’ or ‘medicine’

And anything zero effectiveness on that divided by any cost is just zero effectiveness and wasting money on something that harms and is performing a pantomime at our expense

How can this be allowed?

Why did we go through all the right paperwork of the guidelines with proper analysis pulling up how obvious these games and issues are for someone to let this repeat in?

Oh this time they reckon they’ll easier their conscience by updating their bigotry to new terms to hide it better. It’s still fundamentally deliberately sssuming these are just people who deserve a tweak on the old crap who harmed us and refused to change ?

They know the coercion issue and perceived threat issue and ‘play the good patient’
 
dratalanta said:
I agree Trish. Thank you (and JellyBabyKid) for taking this on. A complaint from you and/or collectively from UK members of S4ME would be so welcome.

The costing of HERITAGE is genuinely shocking. An existing app, mostly existing surveys, predominantly self-selecting participants….

Moreover, as others have said, this project will not generate meaningful data and is a slap in the face for patients. It would be a waste of money if it had been done for £2.50. Like many others I signed up but gave up when it was clear it was not accessible to me. Whomever they are surveying, it isn’t severely affected patients. The abrasive tone of the survey engine emphasises this project’s disregard of patient needs and is the icing on this unpalatable cake.

If any scientific luminaries on here are able to have a private word with senior people at NIHR, to back you up Trish, that would be helpful. A complaint, no matter how well founded, will likely be dismissed without proper consideration. But if it provides a route for the flaws in this project to get through to the right people, there could at least be some institutional learning from this.
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It’s not research it’s goalpost changing and the Crawley et al (2013) end of paper when they as an arm of pace didn’t get any results on physical function measure so suggested

They need to change the measure to remove even a subjective physical function measure

And just use a prom to check the thing that doesn’t work and harms a lot of people ‘is being done consistently’

It’s a sick joke that they laundered us thru this covid farce to pretend throwing us back under the sand with even less illness identifying just ‘similar symptoms to long covid’ being what’s defined as the illness , so another step down to MUS

Then claiming they can use the same stuff that harmed and anti-spirit of the new guideline ideology and approach ‘cos it’s research and they are gonna get a different answer by gerrymandering what’s measured’

And yes it sounds like discrimination and deliberate barriers being used to ensure a krypton factor filter so only the mildest can complete and they’ll warranty claim it’s externally valid for the rest who couldn’t even do bits of it. Same old tricks - sorry but it’s coming across as a facade
 
Andy said:
Would we expect a study like this to publish their protocol early on, or have they done so and I just can't find it?
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The reason for asking this is I am only starting to appreciate what others have previously pointed out, that this is a study that has been set up to provide 'evidence' for the care of people with ME/CFS and Long Covid in the future, yet apparently it will only include a relatively small number (250 attending clinics plus whoever will stick with the godawful ELAROS/AUTONOM-E platform from the wider community) of people with ME/CFS, and that small number is likely to be those more mildly affected and who have been affected for a relatively shorter amount of time. This will inevitably lead to a biased view of what allegedly works or is needed.

In the entry for HERITAGE in the clinical study registry they say
"The study will enrol approximately 3,000 individuals with LC and/or ME/CFS. Allowing for an estimated 50% attrition rate, we anticipate that over 1,500 participants will complete the 12‑month longitudinal follow‑up, providing robust trajectories of symptoms, functioning, and service use over time. "

so their real anticipated number of participants is half of their headline number, so there will be heavy survivorship bias excluding long term and more seriously affected participants.
 
Andy said:
this is a study that has been set up to provide 'evidence' for the care of people
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I think we have been told enough about what the project entails (including at the DecodeME Showcase meeting last autumn) to know that it is incapable of providing meaningful service information and should never have been funded). The detail doesn't bother me. It was always going to be a way of perpetuating the current rehab model. The light at the end of the tunnel is that there seems to more consensus on the working parties talking to government about the need for a complete change of model.
 
The detail might not bother you but I believe that it is important for us to be pointing out the flaws with this now so that we can better resist those who will want to use this in the future to either impede change to a better model or want to reverse any improvement that might have already occurred.
 
Jonathan Edwards said:
I think we have been told enough about what the project entails (including at the DecodeME Showcase meeting last autumn) to know that it is incapable of providing meaningful service information and should never have been funded). The detail doesn't bother me. It was always going to be a way of perpetuating the current rehab model. The light at the end of the tunnel is that there seems to more consensus on the working parties talking to government about the need for a complete change of model.
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That’s reassuring. I had hoped (maybe naively in a hope over experience way) that some of these studies could show that the current model doesn’t work (no difference between intervention and no intervention) but its become clear that’s not what they’re trying to do.

That there is more consensus in the working groups for a complete change is great to hear. I think a lot of us have been increasingly concerned about if some of the charities would go for that.

Is there anything those of us not involved at that level can do to help? Some of us do the writing to charities, writing or speaking to MPs or NHS groups/ICBs/etc. But if there’s anything that we can do help get the message about the level of change needed we need to do it.
 
Andy said:
The detail might not bother you but I believe that it is important for us to be pointing out the flaws with this now so that we can better resist those who will want to use this in the future to either impede change to a better model or want to reverse any improvement that might have already occurred.
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Good point. Worth pulling together the different strands and having a clear concise picture of what the problems are and if we can’t get that, why it’s a problem we can’t.
 
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