United Kingdom: ME Association news

These three researchers Have done great work including their recent pan- European patient survey of Oval 11,000 people. Apart from looking at experiences of treatments and getting social care, they also showed The adolescence and midlife age peaks found in the earlier Norwegian study Replicated. (Though the early peak was only seen Norway, the Netherlands and the UK.

https://twitter.com/user/status/1831366796148142163

 

Might be bloody obvious to us but it's not obvious to others because it hasn't been previously stated in the scientific literature. We need more studies like this that report on the reality of ME/CFS.

 

It's definitely a discipline where telling the simple truth is the most radical act. Well deserved and courageous.

A discipline where telling lies and bullying sick people into misery and death gets you awarded and celebrated by your peers.

Only in politics, business... and medicine.

 

From the MEA's latest email circular - an update on the Tyson project:
___________

Research: The Index of ME Symptoms (TIMES) for ME/CFS

The ME Association is funding a study led by Prof Sarah Tyson (who also has ME) from the University of Manchester, to develop a clinical assessment toolkit in collaboration with people with ME and clinicians in NHS ME/CFS specialist services.

Professor Sarah Tyson says: "Many thanks to the thousands of you who have supported the clinical assessment toolkit project. We are now entering the final stages of the data collection, which is a busy time!"

The final stage of the research is to develop an assessment of ME/CFS symptoms, called The Index of ME Symptoms (TIMES) by working with people with ME/CFS and clinicians in specialist services.

We have completed the initial analysis for the TIMES, which assesses symptomology and we have made quite extensive revision in the light of that analysis and your feedback.

It is now much shorter and simpler with just one question per symptom, although there are still quite a lot of symptoms, as we need to be comprehensive. Therefore, we would now like to double-check that the revised version provides the robust data that we expect it to.

Please could you help by completing the following survey.

More information: https://meassociation.org.uk/pu41
Survey: https://www.qualtrics.manchester.ac.uk/jfe/form/SV_bknLxeAz0N3WkKO

 

https://meassociation.org.uk/2024/09/job-opportunity-freelance-press-officer/

ME Association is advertising for a freelance press officer. Could be suited to someone with (milder) ME given the expected hours/month.

 

Well thats all well & good, not to disparage the campaign in any way.

However, ISTM that its the doctors, HCPs & admin staff who work in the surgeries that need their awareness raising, particularly with ref to the NICE GL, rather than the patients.

What happens when the patient does report those 4 'key symptoms' on the posters?

 

These advocacy projects seem a little archaic to me. I can imagine these will unfortunately go straight in the bin at some practices. EDIT: The plasma screen rental is probably a better idea so I hope that pays off.

 

The three practices I visit all have noticeboards but none have anywhere to put leaflets.

They used to put them on the counters where people speak to the receptionists, but since cleaning routines changed due to Covid, surfaces are all kept clear for easier disinfection. Two of the practices had rotating stands for leaflets, but they disappeared in 2020 and haven't returned.

A5s are still really useful for displaying on small or crowded noticeboards, but practices might not need as many as they might have taken pre-pandemic.

 

I’m all for anything that focuses on debunking the fatigue misinformation

and wonder whether the upside of these things is that I’ve realised healthy people go to the GP more than I realised . And everyone is a hostage in that waiting room. Not all of them have Wi-Fi phone reception etc. people might not have their phone or be over-optimistic it’s not worth getting it out as they won’t be there that long

most other occasions posters get ignored or half-read. But the number I’ve read in full - tho don’t go overboard on small print it’s just that if you have a few points that end in a penny drop at least people might read all the bullets

any change in numbers of people who get’ PEM hammered into them and that someone they know might be highly disabled but ‘don’t look fatigued’ at work it ‘can walk when I see them’ is a good start. And if it gets any fatigue posters down then great.

it’s allied services, teachers, dentists, family members and friends of friends

having no one who will get it or hear you when you explain it’s not fatigue like they imagine fibro but debilitating crashes where you can’t lift your arms then you see them for a certain time another point and they’ve saved energy and seem ok etc.

And that overdoing it causes long term deterioration, not just ‘oops you’ll feel tired after that day out’ meaning you need to rest on Sunday cos I got you out the house etc

well that can make the difference between utter desperation with having no one fir someone and us slowly getting advocates who will understand and the odd friend or colleague who heard. And it’s always a friend of a friend who suggests, but then how many times do you need to read the same to believe it if it’s you?

I agree it’s hard to compete with the screen if that’s got fatigue messages on it but it’s repetitive and seems to always be certain things everyone already knows

I’m talking in theory here from the ‘tech in the future’ days when I was doing my marketing course so it might not exist for good reasons but there used to be talk of having ‘push communications’ to phones from eg certain locations

certainly I suspect I’ve had certain things appear on my social media feeds just because I’ve googled something that’s only tenuously related. Like search equipment or prognosis for someone else’s injury and end up with other stuff on a social media feed.

of course you mightnt trust that - but if it’s the same organisation someone saw in gp surgery first then more trust and that reinforcement (don’t have to be exact repeats but coherent message in a campaign of ‘seven times’) helps.

if more people in general get it when we talk about how ‘yes we mean you who thinks it’s fatigue’ when we say the condition is misunderstood , instead of assuming they aren’t the bigots ‘cos they know we get really tired’ that would really help with getting heard in the need for actual medical care not therapists to teach to be positive issue

of course we need medicine to understand too but …

 

There are parts in mine where they are on the wall - even if they aren’t the major waiting room

my old surgery it was a whole cabinet in that main waiting room and all round the receptionist area . There was a lot of queuing eg to talk to receptionist even so ones in the foyer even made sense

it’s a shame you have to go through head office but chemists might be good too. On wall fir when waiting but people will still have to wait at check out and if they are on desk to pick up that’s great. Plus it catches people just buying supplements or what not rather than just prescriptions

and chemists are taking on more things like sore throats and so on so have appointment rooms.

if we could get pharmacists understanding PEM and proper definition of ME/CFS that would be a win because of their interactions with medics and place on ICBs etc and I don’t know if they will overlap with clinical pharmacists at Gp etc

plus you never know - if we ever had our dream research led centres - I’d like to see scientists there and does doing a science course like pharmacy mean their friendship circle might include eg scientific researchers?

 

The ME Association has published an updated booklet:
Menopause - Overview, Hormone replacement therapy/HRT and female hormone research in ME/CFS

Description:
This booklet provides a valuable explanation of the process of menopause and perimenopause, diagnosis, explaining the different symptoms and information on self management and HRT.

https://meassociation.org.uk/2024/10/menopause-update/

 

https://meassociation.org.uk/2024/1...erds-presentation-to-the-stockport-me-group/?


ME Association:

ME/CFS: Watch Dr Shepherd’s presentation to the Stockport ME Group
October 24, 2024
Recently, Dr Charles Shepherd gave a presentation toStockport ME Group on Friday 11th of October and it has been added to their YouTube channel.

Here is an overview of the subjects covered:

• The reforming of the APPG
• The Department of Health & Social Care delivery plan on ME/CFS
• Media coverage of Maeve Boothby O'Neill's death and the subsequent Prevention of Future Deaths report
• The links between Long COVID and ME/CFS
• NICE Guideline implementation

Read the transcript (via the button) and/or listen to the YouTube video below

Transcript
https://meassociation.org.uk/wp-con...anscript-Dr-Charles-Shepherd-Presentation.pdf

https://www.youtube.com/watch?v=_nT4itDBU5M

 

I read the transcript. The fact that MEA is setting up a "Health and Social Care department" suggests that at least they know where to focus their efforts at the moment. And this sounds interesting:

Anyone know anything more about it? The one criticism that I'd make - other than the fact that he places too much weight on poor-quality biomedical research - is:

Personally, I would be horrified if the existing "specialist services" set up domiciliary provision. There doesn't seem to be an understanding that what we need is an entirely new service model.

 

I have also been consulted on the Suffolk and North Essex plan. Suffolkres knows a lot about this.

Last time I spoke to a person drawing up a commissioning plan there was no guarantee of physician involvement and it looked very much like just buying in BACME services as far as I could gather. I voiced my concerns at that point.

The key problem here I see is the acceptance of the idea of a 'multidisciplinary team'. That is in this context a term used to diffuse and offload clinical responsibility to people with no idea what to do. You may well get something that looks like what is in the NICE guideline but even Charles has made it clear that that is not good enough - it needs to be physician led and to not involve people who therap for the sake of therapping.

 

Yes. Jo.
You were perfectly right and clear. ..
That's been our stance as coproducers.

That's what we have stuck out for and insisted, clinic/ Consultant led MDT.

We have been in complaints process with CEO ICB Board since this became a red line issue in July.
Spec and Pathway was agreed in draft
Version 7?
Friday last...told it would be out as Prior Information Notice but gone down another black hole....

Just had conversation with patient rep lead who will do a ,' look here sunshine' request as today still isn't on contract finder...

May be more on this later after today's request.

Our service in good old days, used to focus on Severely Affected house bound with 30% of referrals in receipt of consultation at home..... ddomiciliary is vital we say.

 

Is the ICB in question relying on a different NHS org to put out the PIN?