What do people want me to ask Sonya Chowdhury on Friday

[Adrian]

Notwithstanding your answers above @Jonathan Edwards, I would like you to speak to Sonya about strategies for advancing research. I can’t accept that there is nothing more that can be done at the moment. If the DHSC working group drew a blank, how can we get more of the right minds thinking about how to solve this problem? In the past I’ve suggest some sort of commission, along the line of the Roger’s commission. I don’t know if that’s feasible. We need more people with the right brains and experience, and without COIs, thinking about how to figure out what’s going on in ME/CFS.

In the end we need politicians to back the need for more research and then processes in place to grow research capacity. Currently there are a handful of researchers in the UK with an interest in ME - that is not sufficient for a coherent research program. I would suggest that we need mechanisms and funding to grow interest and recruit top quality researchers in adjacent fields into looking at ME.

The big strategic efforts to boost research into some conditions (such as dementia) were driven from politicians and the research councils etc responded. I get the impression they have little scope (and the MRC is not flexible even in comparison to the other research councils).

 

[Jonathan Edwards]

What has happened to Stephen Holgate? My recollection is that Sonya got on well with him. Is there anything useful that she could persuade him to to at this juncture?

If Stephen was open to persuading to do something he would have been persuaded at the Research Working Party I think. The issues were openly discussed. I assume he thinks that there is no way to change the people at the centre of funding problems - if the funding problems are what we think they are. He has made a huge contribution, but from 'inside the tent' I think, with all that that entails.

 

[Sasha]

No one seems to be talking any more about how to turn off the tap of new Covid-caused cases of ME. As far as I'm concerned, the pandemic is ongoing - I don't understand why all public health monitoring and mitigation strategies have been stood down, or why we no longer hear about emergency research efforts to get vaccines that could eliminate Covid. I don't know if this is a thing for ME charities to tackle, but I wish somebody was.

 

[Binkie4]

I've spent a fair bit of time recently talking with Stephen Holgate and he certainly isn't BPS school. He is doing what he can to push messages for more research.

I am very glad to hear this. Top quality research is desperately needed but we also need to remain alert to the existence and ongoing influence of BPS people. That group are not yet out of the picture but I'm glad Holgate is not affiliated.


@Robert 1973

Dr Bansal is retiring this year. I wonder if Sonya might ask if he would interested it helping AfME in any way. There are very few physicians in the UK with more experience of seeing ME/CFS patients.

I think keeping Dr Bansal's experience in the process in some way would be extremely useful.

 

[Adrian]

No one seems to be talking any more about how to turn off the tap of new Covid-caused cases of ME. As far as I'm concerned, the pandemic is ongoing - I don't understand why all public health monitoring and mitigation strategies have been stood down, or why we no longer hear about emergency research efforts to get vaccines that could eliminate Covid. I don't know if this is a thing for ME charities to tackle, but I wish somebody was.

I think that is long covid and its relationship with ME is one of the conversations going on and it is bringing new researchers into the area.

 

[Jonathan Edwards]

We need more people with the right brains and experience, and without COIs, thinking about how to figure out what’s going on in ME/CFS.

You have neatly described S4ME. All the right people are here. If they are the right people they have no reason not to be here. Chris is here, friends in Oz are here, even if intermittently because they are busy. We are doing our best. Who is going to do better?

As soon as you convene an official 'task force' you bring in the interested parties and the time-wasters. The Government Working Group got nowhere in comparison to what gets done here.

 

[Sasha]

I think that is long covid and its relationship with ME is one of the conversations going on and it is bringing new researchers into the area.

I hope so, but I don't see in the media any recognition at all that we are in an ongoing Covid crisis with now up to 2m people in the UK with Long Covid and none of the public health action required to prevent the country becoming mired in ill-health. Is no-one campaigning for this? Someone needs to be, IMO. It really baffles me how as a country we're all pretending that people aren't still dropping like flies.

 

[MEMarge]

In 2019 ME Action ran a survey on the clinics in the UK. I'd like to see a follow-up survey, or some other kind of systematic data collection / experience documentation effort to see if anything has changed post-NICE. And whileever the clinics do (unfortunately) exist in their current form any opportunities to make incremental improvements should be taken; I'd like to know if AfME are trying to do that.

The idea of a small liaison group of professionals, whom NHS hospitals could turn to for advice when needing to treat a very severe patient (either for gastroenterological symptoms & malnutrition or for something else entirely) might also be worth exploring.

And yes, thanks @Jonathan Edwards, for doing all of this.

Repeating this ME Action survey or similar would be excellent. (Sian was involved)
It was prepared very quickly and only ran for a couple of weeks, due to NICE time constraints.

It is imperative that a survey such as this is run by a patient centred charity, though BACME can be asked to promote it to the pwME they have seen.

Charles Shepherd, in his recent letter to the Times asked for an audit of current ME clinics. However, who would do this? CQC or other group that has no idea about the lived reality of ME.

 

[Binkie4]

@Adrian

In the end we need politicians to back the need for more researc

My MP changed at the last election, and yesterday I decided to email my new MP to introduce myself and describe the Coroner's Section 28 as well as the current state of no treatments and almost no research for ME.
This morning I have written again using Sean's article to move the issue into the political sphere and asking for his help.

It seemed a good opportunity

 

[JemPD]

It really baffles me how as a country we're all pretending that people aren't still dropping like flies.

Well it seems to go something like this in their minds ...

'theyre not dying and only "those" type of people get "long covid".... it cant/wont happen to me, because I'm strong, healthy, good immune system, mentally strong, would overcome it with sheer force of will/exercise/yoga/positive mindset/juicing/supplements/getting off my fat arse, etc etc... - 'those people' who get LC simply need to take a leaf out of my book, after all, i had covid in 2020 and in 2023 & I'm fine, so clearly those who didnt recover are doing something wrong'.

And then they quickly think of something else because the idea that it could happen to them is unthinkable, much too terrifying, i mean it cant happen to them because they cant afford to be off work etc etc etc.
Denial is a remarkable thing.

ETA: Sorry, this is leading somewhat Off topic

 

[hotblack]

It is going off topic but I may as well join in. As well as covid being ongoing there is a not insignificant number of us with ME who have terrible reactions to the covid vaccines (but not other vaccines). This is a problem in itself as we can’t get vaccinated so are at risk. But it also seems a great opportunity to learn something about ME, the vaccines and covid, but nobody seems interested.

I’m continuing this topic over on a thread elsewhere so as to not derail things here!

 

[MEMarge]

Re The Delivery PLan
It would be good to know if anyone with lived experience of ME was involved in reviewing or analysing the large number of reponses to the Interim Delivery Plan. Or even the DHSC staff who were co-ordinating and assisting the running of the "Attitudes and Education" and "Living with ME" Working Groups.
AFAIK these two groups only ran for several months. Whereas the Research Group ran for about 2 years.

The initial aim as per Sajid Javid was to produce an interim plan in the autumn of 2022. (An overoptimistic timescale)
In the Living with ME Working Group, this centred around 5 areas of concern: Social Care, Work and Benefits, Health Care, CYP (Children and Young People) and Quality of Life.
Workshops in each area were planned and carried out, including people with lived experience (plex), chosen by members of the working group.

This would produce an initial 'landscape' of the current situation. Then, the process would be opened up to a wide range of stakeholders for feedback on the interim plan.

 

[MEMarge]

Another thing to raise with Sonya, which I think she is already involved with, is linking up with Long Covid organisations, to combat the rehab/BPS paradigm.

Does she have any contacts who might be open to sharing the Current Cochrane fiasco with the LC groups?

 

[Haveyoutriedyoga]

Charles Shepherd, in his recent letter to the Times asked for an audit of current ME clinics. However, who would do this? CQC or other group that has no idea about the lived reality of ME.

I expect via NHSE putting together a very basic set of questions on a spreadsheet with a Red Amber Green rating and sending it to Integrated Care Boards or hospitals (depending on who is contracting the service in hospitals) for completion. It would likely be very simple questions without digging into things, and based on what the NICE guidelines say.

e.g. do you use PROMS/PREMS, are you monitoring data for trends, do you accept referrals from primary care and secondary care, are you accepting referrals from X weeks per NICE guidelines, are you attempting to reach people from undeserved populations, is there direct access to diagnostics and specialist advice, do you do multidisciplinary assessments (as in bps).

They would probably ask you to explain e.g. how you're attempting to reach undeserved populations, but wouldn't interrogate the answer at all and the answer could be YES but woolly.

 

[hotblack]

The big question I’d like to see asked is who takes responsibility for the patient and their ongoing needs? The specialist service? The GP? Having clearer visibility of this would be useful I think. Even if I think we know the answer…

 

[MEMarge]

Reminder to Sonya, that the clinics and therefore BACME members, only ever see people at the milder end of the spectrum.

This was confirmed by Dr Phil Hammond in a workshop for the JLA PSP.

The workshops included a wide range of stakeholders and were convened to select in order, the ten most important priorities fron the "short list". I was observing one of the groups. The first stage included reasons for being involved.
Dr Hammond asked after this section, if they were being recorded. They were not, for confidentiality purposes - some pwME did not want to be identified.
He then said that was a shame because it would be a very useful teaching tool for clinic staff as they only saw those with mild ME.

This group included someone whose young adult daughter lived in a darkened room and was being tube fed as a result of doing the Lightning Process as recommended by the consultant at a N London CFS clinic.

 

[Amw66]

As others have said -

• pushing for/ monitoring of NICE guideline implementation- how many other conditions would have so little change made manifest years afterwards and have so little pushback? Hugely disappointing.

• education of clinicians/ consultants - how do we reeducate medics and in particular BACME when they are still driving questionable ( being generous) treatments and research such as PROMS. It colours every medical intervention , and indeed puts people off seeking help for non ME issues. How can we make ME/CFS part of the curriculum going forwards and a compulsory CPD requirement ?

• Moonshot for research given overlap with LC ?

• Developing a strategy for hitting FND on the head - its currently a hydra and is impacting paediatrics hugely - perhaps a consequence of now having psychiatrists/ psychologists in charge at Bath

• having a more coordinated PR/media " front"- more awareness and appreciation of condition could perhaps encourage funding. Build on recent exposure - personally I don't think charities re up to it and this would have to be a professional engagement.

 

[Ash]

No one seems to be talking any more about how to turn off the tap of new Covid-caused cases of ME. As far as I'm concerned, the pandemic is ongoing - I don't understand why all public health monitoring and mitigation strategies have been stood down, or why we no longer hear about emergency research efforts to get vaccines that could eliminate Covid. I don't know if this is a thing for ME charities to tackle, but I wish somebody was.

Yeah. Nearly five years and still going strong.

Of course you’re right @Sasha
charities could, and absolutely should, warn people to start taking whatever precautions they can afford for themselves, and lobbying for air filtration at all schools and work places and especially in healthcare.

Don’t end up like ME.

A public advertising campaign.


Just stop disabling people now.

Right now…

Letters to all hospitals and GP practices asking for them to institute infection controls.

Imagine the pay on agency staff cover, Locum doctors and nurses that could be saved. Buy some FFP2 respirator masks for all medical and reception staff. Plug in HEPA filter air purifier one per room, run at a decent speed. Have CO2 monitors check them to see how you’re doing. Provide and request surgical mask wearing for all visiting staff and patients wherever they are not already wearing their own medical mask.


Open wide some windows and doors between all consultations. Every time. If non sensitive issue during an appointment keep windows open. First they’d have to learn how to open the windows in their building this seems to be a significant obstacle for many.

All spaces without windows require alternative ventilation arrangements. I would have thought the importance of this would be understood, but apparently not.

Install proper ventilation and upgrades to air purification systems to limit spread of Covid in hospitals.

Longer term…

Find some other charities to go in with your heart and vascular, lung, cancer auto immunity, dementia ones whatever, and lobby government to institute air quality regulations for schools colleges and all workplaces. To re-institute mask mandates, but this time FFP2 standards and the employers pay and provide.

As it is now many, maybe most people would lose their jobs if they wore a mask to work. Or else couldn’t afford to purchase a supply anyway.

Children in nursery and school have no choice to protect themselves from poor quality air. For older children they could wear masks at least but if adults can’t go against the peer pressure not to most of the time it certainly shouldn’t fall on them. Children in independent schools and exclusive childcare facilities may experience higher levels of protection in terms of air quality. But like with other air pollution children in most schools and child care facilities aren’t currently protected.

If costs fell on business you’d suddenly see a motivation to stop making workers and their children sick. Maybe it would be worth paying for ventilation upgrades. Or not demanding your sick and or Covid positive staff get themselves in to work. To end the need for masks sooner.

I don’t forgive unions for backing out of the fight over Covid as a work place bio hazard coming under workplace health and safety regulations.
But since they did, it’s on charities to step up.

 

[yME]

To help with the DWP battles so many of us face for years Just because we don’t fit the expected norm.

 

[Ash]

If my post above was too specific action oriented,
please could @Jonathan Edwards ask Sonya the following questions;

1. If AfME currently has any plans to campaign providing education for people with ME, LC or ME-LC on how to protect themselves and others from repeat infections with Covid. The necessity of doing so especially where already chronically ill as deterioration is very likely. As well as deaths and disability and the long term health decline for which all humans are at risk.

2. Given that what people can do for themselves is very limited and vanishingly unlikely to be enough to prevent all infections give rates of Covid in communities and institutions, could she also say if AfME have plans to campaign for safer access for all disabled people to healthcare facilities and other aspects of normal life, children at school, participation in the community, workplace activities etc?

3. If answer to either of these questions is no, please could Sonya explain why a mass disabling event leading to serious illness and death for hundreds of thousand isn’t considered a priority for a charity specifically dealing with infection related illnesses?

4. I shall be very relieved if the answer the first two questions is yes, there are plans. But if so my question would then be why has it taken till now?



Making a case for action.

Surely people with ME and our advocates have an ethical responsibility for trying to protect others across society from the kind of out comes that our community has suffered including premature death and debilitating lifelong illness.

People with ME were themselves warning others of likely long term consequences of SARS-CoV-2 for those for many who would survive the acute phase, before the virus had established its self across the world. A great many have been championing active infection control measures as an access requirement and health and safety issue in the years since.

It would be nice if the charities backed us up with a pro active campaign to protect the community via practical measures

If the answer is no campaign of the nature discussed above is ready or waiting, and this is on grounds of following government or WHO or whatever, then I’d like to point to current swelling ranks of people who are dead from COVID or disabled from COVID as to why this isn’t a sound strategy.

If the answer is no on grounds of other priorities and low organisational capacity, then I’d want to know what could possibly be more important than people all people but of particular relevance here those with ME/LC being able access medical and other essential services without having to face unmitigated risk of contracting a serious infection.