United Kingdom: Sussex & Kent ME/CFS Society News

I think this is the paper I was thinking of. Comparison with the International paediatric primer Co authored by Nigel Speight is interesting and illustrates how far things need to shift.

 

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Sussex & Kent ME/CFS Society conference – September
By admin On 3rd September 2021
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The Research and Management conference that was postponed from 2020 will now take place at Malmaison Hotel Brighton Marina on the afternoon of Friday October 29th.

Speakers will include Dr Jessica Eccles, Dr Alan Stewart, Dr Charlotte Thompson and NHS Sussex-wide CFS/ME Service clinicians along with former B&H Council Leader Simon Burgess.

For ticket information email colin.sussexme@btinternet.com "

https://measussex.org.uk/sussex-kent-me-cfs-society-conference-september/

 

Meanwhile in another galaxy

Malmaison conference Oct 29th – October
By admin On 20th October 2021
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Dr Gabrielle Murphy at Royal Free Hospital says: “Once again the Sussex & Kent ME/CFS Society is hosting a conference that leads in its platform of speakers, all at the forefront of research and clinical delivery of services in the United Kingdom. It is a particularly important conference in the light of what we have learnt and are still learning about Covid-19, and its long term effects as a post infection syndrome, and of course the publication of the new NICE guidance on ME/CFS. Top of the topics are interoception and what has been learned since the early work over a decade ago, and new light shed on inflammatory markers and gene expression. It really is a conference not to be missed.”

PhD student, Marisa Amato says: “One of the most important things I’ve taken on board is the importance of listening to patients. I have felt privileged to hear their stories. I sincerely hope the work we are doing will have areal impact on patient experience in the future, by enhancing scientific and public understanding of ME/CFS.”

Caroline Lucas MP says: “I think this once again shows how lucky we are to have such a fantastic service here in Sussex and the lifeline you have provided for local people during the pandemic highlights the need for increased funding for services and research for people living with chronic fatigue syndrome.”

ME Society chairman, Colin Barton says: “We are fortunate to have good researchers and NHS services in our area that are leading the way in ME studies and illness management. This is a good example of the scientific and medical communities working with the voluntary sector.”

https://measussex.org.uk/malmaison-conference-oct-29th-october/

 

Merged thread
What's the opposite of serendipity ? Conference today (Guideline publication day !) organised by the BPS friendly Sussex & Kent ME/CFS Society:

Research and Management conference – October

Sussex University researchers and specialist doctors are to gather at Malmaison Hotel Brighton Marina on October 29th to discuss recent important research findings and announce other planned studies into the debilitating illness Myalgic encephalopathy or chronic fatigue syndrome (ME/CFS).

The conference is being hosted by the Sussex & Kent ME/CFS Society that works for the approximately 8,000 adults and children that are affected by the debilitating illness to varying degrees across the region.

Speakers will include Dr Jessica Eccles and research doctors from Brighton & Sussex Medical School and Sussex Partnership NHS Foundation Trust who have been conducting studies into ME/CFS and Fibromyalgia directed by Professor Neil Harrison. Subjects covered will include gene expression differences and interoception findings as well as differences in inflammatory markers.

Chairing the afternoon will be specialist ME/CFS physician Dr Alan Stewart whose talk will include Covid-19 and ME/CFS and what importantly has been learned about ME/CFS since the society’s 2016 conference and the NICE Guidelines. Simon Burgess, Former Brighton & Hove Council leader will open the event speaking of his experience.

NHS Sussex-wide ME/CFS Service clinicians that deal with around forty new referrals a month will give an update on regional service provision.

PhD student, Marisa Amato says: “One of the most important things I’ve taken on board is the importance of listening to patients. I have felt privileged to hear their stories. I sincerely hope the work we are doing will have a real impact on patient experience in the future, by enhancing scientific and public understanding of ME/CFS”

ME Society chairman, Colin Barton says: “We are fortunate to have good researchers and NHS services in our area that are leading the way in ME studies and illness management. This is a good example of the scientific and medical communities working with the voluntary sector.”

 

Study involving 2 of the speakers: https://www.s4me.info/threads/fibro...nd-fatigue-expression-2021-sharp-et-al.22941/

 

"The Winter edition of the Sussex & Kent ME/CFS Society’s quarterly 16 page newsletter has been published.

Included in this issue are items about the Malmaison Conference by Prof Les Findley, Anna Gregorowski (BACME), Dr Gabrielle Murphy, Caroline Lucas MP and James Shute of the Sussex CFS/ME Service who writes about his presentation.

Other subjects covered are the new NICE Guidelines and ‘A look at the expert View’ by Cathy Bleach along with Managing Gastrointestinal Symptoms by BACME and a brief on Low Dose Naltrexone research."

https://measussex.org.uk/winter-newsletter-november/

 

Did Caroline Lucas ever reply to your last letter Peter?

 

Peter?

I can't remember, sorry.

 

it would be sooo interesting if participants were given their unique ID number in the raw data, so one could see this contemporaneous evidence alongside how it was 'dealt with' by investigators. Patterns such as people being categorised as dropped-out, recovered/not declining rather than 'yellow-card' equivalent ie adverse effects being noted would be interesting.

 

Indeed. When I did a module on neuropsychology in my degree - with a focus on strokes and accidents in many lectures - I remember the main message I took away was that I didn't realised the age of around 7yrs was when something might be most likely to happen (apparently as there is a huge amount of development occuring at that point).

But also that the picture for stroke recovery was vastly different because only at that young age should a large part of the brain be damaged then it could rewire 'around it' in order to develop said functions that would have been located there. That was what was known as 'plasticity' - you know kids being able to learn to speak or use their arm despite the area that would normally be located being out of action because it can rewire enough in order to take over the function avoiding that problem area. They made the point of noting this was not the same for adults.

It's a bit of a bastardisation to use it for other things. Alos hugely gets up my nose if it is coming from an area that with one hand dismisses without more precise scans those with ME 'because the MRI showed the big pieces were fine' so 'nothing wrong its functional' then tries to pull this one for 'changes' claiming they know they happen. You can't have it both ways surely?

 

For what it is worth, this was posted to a list I'm on.

Source: Sussex & Kent ME/CFS Society
Date: May 2, 2022
URL: http://www.measussex.org.uk


Sussex & Kent ME/CFS Society 2022 Survey - update
-------------------------------------------------

We have received back a really good number of completed survey
questionnaires. We are working with the Brighton & Sussex Medical School
on this as we did last time and a Senior Research Fellow designed the
questionnaire.

This survey is in direct correlation to the previous one that has been
well received by patients and professionals all round for some time but
is now a little outdated.

The last survey looked at which NHS and other services people were using
and how helpful these services were to patients. That questionnaire
which was sent to over 900 people also enquired about which treatments
were being tried and how helpful those were.

After analysing nearly 460 completed questionnaires findings showed that
a number of treatments and approaches were helping a lot of people with
the illness(s) and that most doctors in the area were seen by ME/CFS
patients as being helpful as were the regional specialist NHS centres.

The 2022 analysis is being carried out at the Medical School and they
will produce the report.

Those affected by ME/CFS across Sussex and Kent can request a
questionnaire through the website http://www.measussex.org.uk

 

In this Sussex ME/CFS Society Survey, under

'About the treatments you have tried
We are interested in what treatments you have tried over the last 5 years
and how helpful you found them',

The survey section on what treatments the patient has tried includes Lightning Process.

The possible answers are: Have not tried, Not at all helpful, Some help, Very helpful.


Other treatments listed to be evaluated are:
Pacing
Antidepressants SSRIs
Antidepressants Tricyclics
Pain medication
IBS medication
Migraine/headache medication
Lifestyle management courses or groups - NHS or other
Specialist CBT
Specialist graded exercise
Homeopathy
Acupuncture
The Lightning Process
Diet and Nutrition
Yoga
Other




......................................................................................................................





Sussex CFS Society Chair, Colin Barton, was interviewed by Kate Kelland in March 2019 for her Reuters article entitled 'Online activists are silencing us, scientists say'. In that article Colin Barton is quoted as saying that talking therapies and graded exercise helped him recover to the point that he can lead an almost normal life.



https://www.reuters.com/article/uk-science-social-media-specialreport-idUKKBN1QU1ET

'Online activists are silencing us, scientists say'

'Colin Barton, chairman of the Sussex and Kent CFS/ME Society – a patient group in southern England – said talking therapies and graded exercise helped him recover to the point that he can lead an almost normal life. He told Reuters that in his experience, patients who talk about having been helped by psychological or graded exercise therapies come in for abuse just like the researchers. They face accusations that they were never ill in the first place; that their condition was misdiagnosed; and that their recovery is therefore fake, he said. As a result, he said, many recovering or recovered CFS/ME patients feel forced to withdraw from the debate.'





The Sussex ME/CFS Society Medical Advisors include
Professor Esther Crawley
Dr Alastair Miller
Professor Leslie Findley

Two of whom have actively worked with Lightning Process with patients (incuding the SMILE Trial).



I would worry for ME sufferers in Sussex being 'represented' by such a Society, which does not appear to relate to people who suffer from the biomedical multisystem neuro immune disease ME, or show concern for their medical safety re graded exercise and CBT as treatment.

 

If I remember correctly the Society’s turn over is not large enough for it to need to submit itemised accounts to the Charities Commission and they have repeatedly declined to reveal the size or the make up of their membership. Their conferences seem to have a distinct BPS angle and the number and status of their medical advisors exceeds that of most national ME charities, the MEA only has two. Also several of these advisors are based a distance from Sussex and have no obvious current professional links to the County. [added - One can not but wonder why a small? local group in an area also covered by another patient group more in step with the general patient community should require so many high profile medical advisors.]

They were very prompt to share online information on the Royal Colleges’ objections to the draft NICE guidelines before they were finally adopted, indeed seemed to have put a statement on line before it was more generally available, but they failed to share any information from those that supported the new guidelines. It might be worth looking to see if they themselves submitted any feedback to the NICE guidelines review process.

I suspect that when BPS grandees cite some patient groups/charities actively supporting CBT/GET they mean this Society and Prof Crawley’s parent group in Bath.

 

Thinking back to when I was still working in the NHS, it was part of my job within my clinical specialism to work with/support professional and voluntary groups within my district, my region or nationally. So time and travel would be covered by my host trust, however this would not be so for work with a local group not only out with my district but also out with my region.

If could be that professors have less scrutiny either in their clinical or academic capacity, or it could be that these professors’ time and expenses are gifted by themselves or covered by the charity itself, but it still begs the question why a professor would be actively involved in a local ME group several hundred miles away.

 

Loads of possible answers. Public engagement is something that academics are encouraged to do, research costs, professional development and so on; I'm unsure how rigorous the sign-off would be for trips relating to such - and it would probably depend on not just university policy but how 'well-off' the department was and how well thought of the individual was. It also isn't like their projects don't get a lot of budget for a train far here or there. To be honest Sussex isn't far from London where a lot of these might be based at various points - many academics don't live where their university is although quite a few commute from places like London, there might be other engagements in the area etc. so not undoable as a daytrip

The allegiance to the club is strange though. Some of the photo on the join us page indicate meetings of something with strangely good attendance (lots of local groups are lucky to get up to 10 turn up to a meet).

I've just noticed professor pinching on the patrons - I've heard him mentioned on social media before I'm sure in 'he was one of the good ones' type terms?

 

They don't appear on the list of stakeholders in the Guideline process, and they made no submission, or at least no published submission, to the Guideline process. From memory, you didn't need to be a registered stakeholder to make a submission but only submissions from registered stakeholders were published, so theoretically they could have made a submission and there would be no public evidence of it.

 

Thank you @Andy

 

I saw Professor Pinching in Cornwall, and found him very good, and understanding. He wrote a supportive letter to my GP, I believe.

He was one of the main AIDS professors before that.

https://meassociation.org.uk/2011/09/professor-tony-pinchings-farewell-message/

 

'Local' Charities and Groups are excluded by NICE - 'Manual for Guideline Development'- as being 'official' stakeholders. You have to be part of a national coverage group; hence my group was excluded from Suffolk but LocalME with me as rep was allowed... eventually!

 

NHS endorsement of Sussex and Kent ME/CFS society.

this comes up as a 'service'

https://www.nhs.uk/services/service-directory/sussex-and-kent-me-cfs-society/N10497419