The HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE)
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Chandelier
Senior Member (Voting Rights)
Sorry if I derail this thread, I lack the energy to read it all but I stumbled upon this comment by Sarah Boothby under Ponting‘s Bluesky post:
Is he involved in any capacity?
Another comment from Bluesky:
This got me to search this thread for the keyword "mental" which led to Wessely.
Is he involved in any capacity?
Another comment from Bluesky:
I'm taking part in Heritage. There is as far as i know no involvement of psychiatry or Wessely. It's led by Manoj Sivan who is a professor of rehabilitation medicine.
There are 2 ways to take part. One involves filling in a bunch of questionnaires once every 3 months for 12 months. This is done either via an app or you can request paper copies. I had some problems with accessing it via the app which were quickly sorted after i emailed the given contact.
The second way is an interview which you can choose to do either by online live conversation (zoom or similar) or phone, or in writing. I have asked to do it in writing, i assume by email, and have been sent the instructions which i haven't looked at yet.
I would encourage eligible people in the UK to take part. This is expected to influence our medical care provision.
There are 2 ways to take part. One involves filling in a bunch of questionnaires once every 3 months for 12 months. This is done either via an app or you can request paper copies. I had some problems with accessing it via the app which were quickly sorted after i emailed the given contact.
The second way is an interview which you can choose to do either by online live conversation (zoom or similar) or phone, or in writing. I have asked to do it in writing, i assume by email, and have been sent the instructions which i haven't looked at yet.
I would encourage eligible people in the UK to take part. This is expected to influence our medical care provision.
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InitialConditions
Senior Member (Voting Rights)
This is silly. There's no involvement of Wessely in this project. Wessely is simply one of hundreds of clinicians and academics who have had an NIHR Senior Investigator award at some point.
Not sure which trust this is referring to. Probably the Cornwall Partnership NHS Foundation Trust, which is one of the named Heritage clinics. A quick google reveals why they are probably included: they run the Cornwall and Isles of Scilly ME/CFS service. It's not uncommon that an ME/CFS service is delivered by a community/rehab/mental health NHS trust.
I think it's important that people here take part if they can.
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Exclusion is if you've been seen by a different ME/CFS or LC clinic from the listed ones in the last 3 years. My contact with my local clinic was 15 years ago, so i can take part.
Seems odd to me too.
Andy
Senior Member (Voting rights)
So I decided to sign up for this, although I'm unsure what value there will be in this.
Some of the first questions in the study are
Just before the start of your Long COVID or ME/CFS, how many hours did you spend on paid work (including self-employment) in a typical week?"
Just before the start of your Long COVID or ME/CFS, how many hours did you spend on unpaid work (e.g. childcare, education) in a typical week?
Just before the start of your Long COVID or ME/CFS, what was your monthly income from work before tax and other deductions?
Given that I developed ME/CFS as a child, I'm not sure my answers are going to make much sense.
Some of the first questions in the study are
Just before the start of your Long COVID or ME/CFS, how many hours did you spend on paid work (including self-employment) in a typical week?"
Just before the start of your Long COVID or ME/CFS, how many hours did you spend on unpaid work (e.g. childcare, education) in a typical week?
Just before the start of your Long COVID or ME/CFS, what was your monthly income from work before tax and other deductions?
Given that I developed ME/CFS as a child, I'm not sure my answers are going to make much sense.
V.R.T.
Senior Member (Voting Rights)
I worry from his email interactions with JE (shared on here earlier this year) that Sivan may be the embodient of the 'when you have a hammer' mentality.
I am concerned about giving my time and energy to a process that may well be used to rubber stamp more harmful and useless provision.
V.R.T.
Senior Member (Voting Rights)
That doesn't make any sense! And does the fact I had two telephone appointments with a service that offered me a useless group online course on fatigue, which I refused, really disqualify me?
This makes absolutely no sense
BrightCandle
Senior Member (Voting Rights)
Another study that is excluding the main people harmed by the NHS, the ones they refuse to diagnose and don't even have services for them. Aka as excluding the majority of patients.
It seems they are asking for patient experiences to inform them development of services
But don’t know what the questions are
And there are two groups - those who attended certain specified clinics in last 3 yrs (inc Leeds and Leicester)
And those who haven’t - but then they are called ‘non-clinical’
Manoj Sivan involved
But don’t know what the questions are
And there are two groups - those who attended certain specified clinics in last 3 yrs (inc Leeds and Leicester)
And those who haven’t - but then they are called ‘non-clinical’
Manoj Sivan involved
V.R.T.
Senior Member (Voting Rights)
This really does set off alarm bells for me.
Felis Catus
Senior Member (Voting Rights)
I fear there will be many suggestions for multidisciplinary clinics because "we have a complex multisystemic illness", so not much is going to change, only that it will get patients' "approval".
My LC clinic did GET. I was quite disabled from the onset but no one there suggested ME/CFS diagnosis despite me being ill for almost 2 years. I don't trust those services to make a correct diagnosis if the diagnosis wouldn't justify their jobs. I fear that if/where LC and ME/CFS services merge, there will be a delay in diagnosing ME/CFS so that patients can go through more LC therapies, including GET.
My LC clinic did GET. I was quite disabled from the onset but no one there suggested ME/CFS diagnosis despite me being ill for almost 2 years. I don't trust those services to make a correct diagnosis if the diagnosis wouldn't justify their jobs. I fear that if/where LC and ME/CFS services merge, there will be a delay in diagnosing ME/CFS so that patients can go through more LC therapies, including GET.
BrightCandle
Senior Member (Voting Rights)
They aren't worried about complying with NICE in practice anyway in the ME clinics. They will just do GET under its new name of Rehab and carry on as they always did. None of them is concerned, there are zero consequences for them doing this and they know it. They think NICE is wrong and they have no intention of complying with any of it.
Jonathan Edwards
Senior Member (Voting Rights)
"The HERITAGE study aims to address an urgent question in NHS healthcare: how to deliver effective, equitable, and evidence‑based care for people living with Long Covid and ME/CFS?
The study team will evaluate different models of healthcare service delivery and develop a National Service Framework based on evidence, patient experience, cost‑effectiveness, equity, and high‑quality clinical care."
And none of that is doable until we have some evidence of efficacy.
As Manoj Sivan said, this is not about doing controlled trials. So there will be no evidence.
I fail to see any justification for this. It is likely to get patients' expectations up for no good reason.
The study team will evaluate different models of healthcare service delivery and develop a National Service Framework based on evidence, patient experience, cost‑effectiveness, equity, and high‑quality clinical care."
And none of that is doable until we have some evidence of efficacy.
As Manoj Sivan said, this is not about doing controlled trials. So there will be no evidence.
I fail to see any justification for this. It is likely to get patients' expectations up for no good reason.
hotblack
Senior Member (Voting Rights)
Only new ones. Fresh, vulnerable and ready to be convinced. Those of us tainted by having been here before can see the emperor has no clothes but saying so gets us looked at funny.
That the NHS and so many healthcare professionals can continue to pull this con on people and pretend it’s care is a scandal. That charities representing us are going along with it is a tragedy.
There is no evidence and it looks like no real evaluation of different models of care. They’re searching for evidence for models they’ve been trying for years rather than evaluating the models we have asked for like ‘support us as we need and stop making us worse’.
I would encourage eligible people in the UK to do sign up to do the interview option for the study. The questionnaire route seems to give no opportunity to say what service we want/need in place of rehab. You can do it in writing if you're not up to speaking online or by phone.
Which reminds me I must get on and do this.
Which reminds me I must get on and do this.
hotblack
Senior Member (Voting Rights)
That’s a good point @Trish, thank you to you and others trying to give your inout despite the barriers and I wish I was able to. That only people from certain locations and then only a small selection of options for services seem to be being compared is my part of the problem here. Parts of this feel a bit like the ‘we studied CBT and MBSR in a carefully managed group of people who thought it may help them and found that it did’ studies.
I’d like to think there’s a chance of the outcome here being ‘okay we have some evidence that what we have been doing doesn’t work and we need to do something different’. I’m not sure how open those running the study or indeed the way the study has been designed are to this outcome. But having honest views from real patients seems the only chance.
I’d like to think there’s a chance of the outcome here being ‘okay we have some evidence that what we have been doing doesn’t work and we need to do something different’. I’m not sure how open those running the study or indeed the way the study has been designed are to this outcome. But having honest views from real patients seems the only chance.
Well that was an epic fail.
I applied a few weeks ago to take part in the interview section. I had a prompt response welcoming my offer to take part. I haven't had a reminder or any message asking whether I still want to take part.
The reply included a consent document to fill in. I failed to download it on my laptop which doesn't read docx, and anyway I can't sign a document with a mouse. So I tried my phone, where I could read it, but not sign or download and send it. Rather than going through the palaver of trying to work out how to deal with it online, I finally got around today to emailing them to ask them to send a paper copy.
I also took a look at the questions that interviewees are being asked. They seemed to me to be all focused on whether you had accessed the ME/CFS service and what was good about it, with no offer of an alternative model of service for interviewees to consider and comment on. The impression I got from a quick read through was that rehab is the model under discussion, and they're looking for suggested tweaks.
So I added this to my email:
Minutes later this automated reply pinged back: