Action for M.E. 2019 AGM and conference 15th October 2019

[Sly Saint]

AFME do love a good survey

yes. But what's the point if they ignore the results; ie the survey they did before the PACE trial showing that (can't remember the actual figure) 50% (?) of people reported GET making them worse.
Yet they still thought it was a good idea to put more pwME through it for the PACE trial.
Then they act all surprised and said 'but our survey....'
How was that ethical or in the best interests of pwME?

 

[Cinders66]

Does Ed scully have much influence within the department of health, is he an established ally or an invited official?. I missed the first half of the discussion.

 

[Sly Saint]

 

[Dolphin]

We can always want more but it is something and it’s not as if it is solely a research charity and it’s not even the only charity raising money for research in the country. Lots of ME charities around the world don’t raise anything for research.

I remember when Chris Clark said they were no longer going to raise money for research and instead were going to lobby for research with the pie-in-the-sky figure of £35 million a year, 1% of the cost to the country figure. I don’t recall many people challenging it: lots of people in the ME community seem to think it’s really governments’ job to fund nearly all the research.

 

[Cinders66]

Hi - Here's the profiles of the panel members, taken from the program - HTH! View attachment 8777

Thanks that’s helpful. I had seen some background info but couldn’t locate it. I’m wondering if we are expecting him to do anything or if like the minister of health, Stephen brine he will essentially listen them declare the usual wheels must all eventually turn to produce progress without any intervention. In my view the British position of saying the CFS biomedical research field must grow alone when the medical schools weren’t teaching it & the rcgp were teaching it’s deconditioning and exercise was massively over represented as effective treatment for an imposed broad umbrella the patient group has always criticised etc was ludicrous.

The bits I did hear seemed to be about us producing the evidence to convince the hostile mindsets. Well we have been trying past decade but I’m personally hostile to the notion that on many layers obviously unwell people have to somehow demonstrate how their bodies (Via an abundance of good expensive biomedical research) are ailing before prejudiced physicians will even listen to any “arguments” they are making. I watched the talk by dr Ron Thomkins the other day, very much a newbie, but seemingly entirely aware of the core presentation of the illness and its “devastation “ , his word, so it seems more a problem of prejudice in parts of the world and a tendency to by default treat the unexplained as psychological than just “ a weak case” on our part.

it would br Nice if people in power could start to recognise that the system in place has cracks and means that it’s not always that research interest & state resource is commensurate with disease burden and not ethical to leave the stigmatized or unpopular to languish. That’s also possibly a problem in other illness where breast cancer is more “ sexy “ to fundraise for than prostrate.

 

[Jonathan Edwards]

the people from BACME (the therapists organisation) who tell her they are not really doing GET and CBT as described in PACE, and are really treating patients as individuals and doing what is best for each patient from their clinical experience and the feedback they get. Sonya doesn't seem to understand that this is hugely problematic.

This struck me hard in the context of the NICE committee. The answer to the criticism of PACE from the therapists is that they do not do the treatment that way anyway. So there is no evidence base at all! They do not appear to understand the ethical responsibility to know what they are doing. It is completely impossible for therapists to know what is best for each patient if we do not even know any of what they do is of any value.

 

[Natalie]

Hi - Here's the profiles of the panel members, taken from the program - HTH! View attachment 8777

Ed Scully seemed astonished that people could die from ME when he was talking to Nina afterwards, at which point I gave him a dvd of Voices and asked him to also look out for the Dialogues project on the Voices website - videos that should be suitable for GPs. I also gave a dvd to Ben Howlett ,as they had both said they wanted to learn more about the illness.

 

[Trish]

Thank you for doing that @Natalie. Your work is so valuable.

 

[janice]

I asked the question about whether DoH/NHS yet know how many people there are in the UK living with ME? (following on from the questions asked by the brilliant MP Carol Monaghan in the various parliamentary debates earlier this year where it was clear the DoH didn't)
I still don't know the answer to be honest. Does anybody?
Surely the NIHR/PHE or NHS? could use their databases to search the GPs electronic records to find out? (I know I'm very easy to dismiss because I'm just an overwrought, angry and frustrated pwME.....apologies for the rant.)
What's the point of getting and storing the data if it isn't mined for information?

 

[Trish]

I think there's a problem with knowing how many have ME, as so many are either wrongly diagnosed with CFS or ME if they have any 'tired all the time' condition, and on the other hand, many with ME are not diagnosed. But I do agree there should be some attempt to find out the figures.

 

[Cinders66]

Ed Scully seemed astonished that people could die from ME when he was talking to Nina afterwards, at which point I gave him a dvd of Voices and asked him to also look out for the Dialogues project on the Voices website - videos that should be suitable for GPs. I also gave a dvd to Ben Howlett ,as they had both said they wanted to learn more about the illness.

I find Your lost voices book is a great resource to share too @Nathalie Wright . People can get the gist just by flicking through and reading one case study. That’s sometimes less intimidating/“burdensome” than the film I think.

 

[Andy]

Playing devil's advocate here, on the same basis we could look at the amount of money that IiME raises and then complain at the lack of services other than research that they supply. Not every organisation is going to be totally focused on research.

 

[Cinders66]

I asked the question about whether DoH/NHS yet know how many people there are in the UK living with ME? (following on from the questions asked by the brilliant MP Carol Monaghan in the various parliamentary debates earlier this year where it was clear the DoH didn't)
I still don't know the answer to be honest. Does anybody?
Surely the NIHR/PHE or NHS? could use their databases to search the GPs electronic records to find out? (I know I'm very easy to dismiss because I'm just an overwrought, angry and frustrated pwME.....apologies for the rant.)
What's the point of getting and storing the data if it isn't mined for information?

there was this prevalence research by nacul et al which I thought was pretty good using Fukuda versus CCC possibly. He studies data from a few geographical areas and then extrapolates. It’s worth looking at. I can’t find the relevant bits right now.
https://www.ncbi.nlm.nih.gov/pubmed/21794183

 

[NelliePledge]

As a civil servant Ed Scully has to work with and through NHS and RCGPs it’s not as straightforward a power relationship as a senior civil servant in DWP has on benefits where much of the work In running the system is done by people in their own organisation. Nevertheless the fact that he has now been exposed to a perspective that differs significantly from the status quo can only be positive. Questions being asked inside the establishment can help change things. Maybe not as radically as we would like but it can help people who are not dogmatic supporters of the status quo feel there’s less risk from voicing dissent. And that kind of ripple effect can help people ie medics see the emperor is naked.

ETA also senior civil servants don’t appreciate feeling that people have been pulling the wool over their eyes so can get quite pushy to get things shaken up if they feel that’s been the case.

 

[Andy]

Invest in ME Research
the clue's in the name

Fine, but where is the commitment in the name "Action for ME" to research?

Our mission is empowering people with M.E. to fulfil their potential and secure the care and support they need, while working towards a greater understanding of the illness and ultimately a cure.

I am in no way saying that AfME are perfect, they are not, but the particular argument being used is like complaining about a butchers not having the same selection of vegetables that a greengrocers might have - technically accurate but unrealistic.

 

[janice]

there was this prevalence research by nacul et al which I thought was pretty good using Fukuda versus CCC possibly. He studies data from a few geographical areas and then extrapolates. It’s worth looking at. I can’t find the relevant bits right now.
https://www.ncbi.nlm.nih.gov/pubmed/21794183

My understanding was this paper only covers a few (3 or 4) area health authorities.
My point really is :
How can the government/NHS budget for proper care of ME patients without mining their databases to get the accurate objective measure of the ME/CFS patient numbers to be funded and appropriate care supplied?

I checked my electronic medical records and I am down as having CFS.....I know that the GP practice views me as having ME/CFS (post infectious) but still can't come up with a treatment plan (of course) after 14 years. I have no expectation that they will to be honest.

Surely though this is "an unmet need" which has been ignored for years?

 

[Dolphin]

This study looked at incidence using GP databases (though not prevalence I think)
https://journals.sagepub.com/doi/full/10.1177/0141076817702530

J R Soc Med. 2017 Jun;110(6):231-244. doi: 10.1177/0141076817702530. Epub 2017 Mar 30.
Trends in the incidence of chronic fatigue syndrome and fibromyalgia in the UK, 2001-2013: a Clinical Practice Research Datalink study.
Collin SM1, Bakken IJ2, Nazareth I3, Crawley E1, White PD4.
Author information
1
1 School of Social and Community Medicine, University of Bristol, Bristol BS8 2BN, UK.
2
2 Norwegian Institute of Public Health, 0403 Oslo, Norway.
3
3 UCL Department of Primary Care and Population Health, UCL Royal Free Campus, London NW3 2PF, UK.
4
4 Wolfson Institute of Preventive Medicine, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London EC1M 6BQ, UK.
Abstract
Objective Trends in recorded diagnoses of chronic fatigue syndrome (CFS, also known as 'myalgic encephalomyelitis' (ME)) and fibromyalgia (FM) in the UK were last reported more than ten years ago, for the period 1990-2001. Our aim was to analyse trends in incident diagnoses of CFS/ME and FM for the period 2001-2013, and to investigate whether incidence might vary by index of multiple deprivation (IMD) score. Design Electronic health records cohort study. Setting NHS primary care practices in the UK. Participants Participants: Patients registered with general practices linked to the Clinical Practice Research Datalink (CPRD) primary care database from January 2001 to December 2013. Main outcome measure Incidence of CFS/ME, FM, post-viral fatigue syndrome (PVFS), and asthenia/debility. Results The overall annual incidence of recorded cases of CFS/ME was 14.8 (95% CI 14.5, 15.1) per 100,000 people. Overall annual incidence per 100,000 people for FM was 33.3 (32.8-33.8), for PVFS 12.2 (11.9, 12.5), and for asthenia/debility 7.0 (6.8, 7.2). Annual incidence rates for CFS/ME diagnoses decreased from 17.5 (16.1, 18.9) in 2001 to 12.6 (11.5, 13.8) in 2013 (annual percent change -2.8% (-3.6%, -2.0%)). Annual incidence rates for FM diagnoses decreased from 32.3 (30.4, 34.3) to 27.1 (25.5, 28.6) in 2007, then increased to 38.2 (36.3, 40.1) per 100,000 people in 2013. Overall annual incidence of recorded fatigue symptoms was 2246 (2242, 2250) per 100,000 people. Compared with the least deprived IMD quintile, incidence of CFS/ME in the most deprived quintile was 39% lower (incidence rate ratio (IRR) 0.61 (0.50, 0.75)), whereas rates of FM were 40% higher (IRR 1.40 (0.95, 2.06)). Conclusion These analyses suggest a gradual decline in recorded diagnoses of CFS/ME since 2001, and an increase in diagnoses of fibromyalgia, with opposing socioeconomic patterns of lower rates of CFS/ME diagnoses in the poorest areas compared with higher rates of FM diagnoses.

KEYWORDS:
Chronic fatigue syndrome; diagnosis; fibromyalgia; general practice; incidence; fatigue; myalgic encephalomyelitis; post-viral fatigue; primary care

PMID:
28358988
PMCID:
PMC5499564
DOI:
10.1177/0141076817702530

 

[Jonathan Edwards]

How can the government/NHS budget for proper care of ME patients without mining their databases to get the accurate objective measure of the ME/CFS patient numbers to be funded and appropriate care supplied?

I think an important point of the Nacul study was that definition of ME is so uncertain that you have a tenfold range of possible prevalence and in order to know what prevalence is for any given set of criteria you have to re-check each case because the raw data on records will be wildly inaccurate. There was another study in the States that indicated that many more people are diagnosed with ME/CFS by their doctors than actually fit criteria.

As a practicing specialist I do not think one actually needs these data trawls. If people are being referred with conditions for which you do not have enough resources you need to organise more resources. And the NHS has no strategy for providing resources on the basis of calculated need anyway. Each hospital appoints whoever the managers think they are going to get income for.

 

[janice]

This study looked at incidence using GP databases (though not prevalence I think)
https://journals.sagepub.com/doi/full/10.1177/0141076817702530

I haven't seen this before....v. interesting and I aim to read later..............although those 2 authors PD White and E Crawley warns me that my energy levels will need to be in better state before I look

Plus I noticed PD White using Queen Mary as his location even in his latest paper in 2019...................I thought he'd retired and hence couldn't get PACE raw data........???

.Apologies I've been pretty much out the loop this last year so I guess I missed this discussion before?

 

[janice]

I think an important point of the Nacul study was that definition of ME is so uncertain that you have a tenfold range of possible prevalence and in order to know what prevalence is for any given set of criteria you have to re-check each case because the raw data on records will be wildly inaccurate. There was another study in the States that indicated that many more people are diagnosed with ME/CFS by their doctors than actually fit criteria.

As a practicing specialist I do not think one actually needs these data trawls. If people are being referred with conditions for which you do not have enough resources you need to organise more resources. And the NHS has no strategy for providing resources on the basis of calculated need anyway. Each hospital appoints whoever the managers think they are going to get income for.

Thank you for that information.....startling.

Since I obvs don't know the details of processes used by NHS, the more I get to hear the more Kafka-esque it gets.

What are all databases used for?