United Kingdom: News from Forward-ME Group

[Utsikt]

The tone of the open letter and almost everything I can remember that you have published has been spot on. We should always be unequivocal in our criticism of research, policy, theories, proposals etc. Where I feel more care may sometimes be expedient is in the tone we use in discussions on here.

I have regretfully had a few comments removed by moderators (in a very kind way, I might add) because they crossed the line.

Some of them were written in anger and I would not have said the same when calmer. The were outbursts. I should have waited.

Others were poorly formulated due to a combination of brainfog and language barriers. Perhaps emotions made me click post too soon as well.

But regardless of that, I will never be able to write like Jonathan or Trish or you in English. In my healthy days I was able to write diplomatically in my native language. I’ve been commended for my ability to facilitate difficult and complex discussions. That ability is also gone.

I can usually only follow one train of thought at the same time. Thinking «how will this be received» or looking around for better ways to express thoughts is impossible. I’m lucky if I’m able to put words to my thoughts once.

So while I agree that some ways of communicating might in theory be more efficient, some of us have to make do with what we’ve got.

 

[Felis Catus]

There are also cultural differences. What is considered formal and polite in one language doesn't literally translate to another.
It takes a lot of exposure to pick up the linguistic and cultural nuances.

Some native English speakers don't seem to take it into consideration.

 

[NelliePledge]

What other spaces are people using to engage in publicl discussion with other people about ME/CFS including people who are severely affected and people who are carers for severe PWME where despite cognitive impairments and talking about horrendously stressful situations everyone is able to maintain diplomatic approach all the time? Because I don’t know of anywhere like that.

 

[Hutan]

Note from the moderators:

The topic of this thread is News from Forward-ME Group. Please consider if your post is about something recent happening with Forward-ME before posting. If not, please find another thread for your post.

 

[Sly Saint]

If they posted their paper / article and left it there, they'd have a lot more to read on their return but it would contain multiple viewpoints.

yes; some members are maybe too quick to jump in with a comment, often without having properly read the paper/article or allowed the poster to maybe explain possible issues. A bit 'shoot first ask questions later'.

 

[bicentennial]

We should not be the highest standard of scientific criticism .. the only place where any actual substantial criticism seems to be happening

professionals who come in, they are so obviously not used to defend their position and present arguments that aren't accepted in advance.

People who had to defend PhD theses fall apart at the slightest bit of substantial criticism, get emotionally defensive and usually give up

Things are catastrophic, our lives are at stake and we are failed at every single stage, but everything should be polite and non-confrontational?

might even explain why nothing has been done. If everyone is nice and congenial while our house is on fire and no one is doing anything

We have to be nice, but we can . be more critical about it than anyone else because no one is doing that . abnormal and dysfunctional context.

Sounds like one big mutual appreciation society campaigned to get governments agreed that it is a national stigma of extreme prejudice so it will all stop ... if we all be nice and co-operate. For 10 years people told me "Yeah yeah, we all know about ME now - no-one does that any more". 30 years back Social Services said the same thing in Annual Reports - "we don't do that any more".

young researchers and those with ME/CFS themselves might benefit from allowing the debate to play out before they respond.

So would I. Several replies later then I am much better informed. And I'd get a tea-break - maybe next year. Meanwhile I must trust Forward ME to retain and expand its diverse input and allow for differences to be stated too

 

[Trish]

Posted by #ThereForME

What does the future hold for Forward ME?​

An interview with Carolyn Leary, the newly appointed chair of Forward ME​

 

[Sly Saint]

useful link to their website:

Forward ME – Stronger Together

forward-me.co.uk

I've only read the beginning of the interview and she says about who's a member "There’s #MEAction Scotland". They don't seem to be on the website 'Our Members' page, nor is #MEAction UK. There are a few members I've not heard of before:

ME Local Groups Network UK​

MESiG (ME Support in Glamorgan)​

Patient Advisory Group for the ME Research Collaborative (PAG)​

Our Members – Forward ME

forward-me.co.uk

 

[JellyBabyKid]

useful link to their website:

Forward ME – Stronger Together

forward-me.co.uk

I've only read the beginning of the interview and she says about who's a member "There’s #MEAction Scotland". They don't seem to be on the website 'Our Members' page, nor is #MEAction UK. There are a few members I've not heard of before:

ME Local Groups Network UK​

MESiG (ME Support in Glamorgan)​

Patient Advisory Group for the ME Research Collaborative (PAG)​

Our Members – Forward ME

forward-me.co.uk

ME Local Groups Network UK has a thread:

Thread 'UK: ME Local Network' https://www.s4me.info/threads/uk-me-local-network.24332/

We are up to 32 group members nationally and will be five in August

 

[It's M.E. Linda]

There are a few members I've not heard of before:

…​

Patient Advisory Group for the ME Research Collaborative (PAG)]​

See recent post with updates in the thread below.

Previously PAG of CMRC, now MERC.

Post in thread 'United Kingdom: ME Research Collaborative (MERC) [was CMRC] news'
https://www.s4me.info/threads/unite...aborative-merc-was-cmrc-news.2809/post-450394

 

[It's M.E. Linda]

There are a few members I've not heard of before:

…​

MESiG (ME Support in Glamorgan)​

…]​

Local support group in Glamorgan

https://mesupportinglamorgan.co.uk/latest-news/

 

[Jonathan Edwards]

I attended the online meeting between the Department of Health and Forward-ME today.
I was more encouraged than I expected.

One thing onf note was the `DHS people pointed out that at present within NHSE nothing can be presented to ICBs as mandatory - neither education in ME/CFS nor aspects of service. The DHS representative clearly saw that this was problematic in the context. Together with funding constraints it underlined just how little guarantee can be expected of anything much.

There was a sense that the service is likely to look rather like what is currently provided by some regions - BACME style maybe. On the other hand a number of delegates brought out cogent points about what needed to change. I thought Carolyn Leary, who has taken over as chair of the Forward-ME group was particularly on target and succinct.

There were several comments that discharge at one year should not be default - there should be no specified discharge time for someone still ill with ME/CFS. There was continued emphasis on severe and very severe that was good to hear.

There was some division of opinion on medical involvement. Everyone seemed to agree that there should be involvement of a physician and some emphasised that doctors should do the diagnosing, but some thought they could delegate tasks, including diagnostic assessment. This seemed to be either a concession to cost or maybe a reflection of doctors not wanting to have too heavy a workload. I think there is still a long way to go here but since we hardly have any doctors who know what to do maybe we should be grateful for the shift of emphasis so far.

An interesting point made was that if a service for long term care becomes a reality there is a vast backlog of people who already have ME/CFS to be catered for, as well as new cases.

 

[Jonathan Edwards]

SOmething else. took my interest. Charles Shepherd mentioned that Yvette Cooper has a "longstanding interest in ME/CFS". I hope he is right.

 

[Utsikt]

SOmething else. took my interest. Charles Shepherd mentioned that Yvette Cooper has a "longstanding interest in ME/CFS". I hope he is right.

She got ME/CFS when she was 24 according to this article that I do not have an account for:

https://www.telegraph.co.uk/culture/hay-festival/8557386/Hay-festival-Yvette-Cooper-talks-of-battle-with-ME.html

 

[InitialConditions]

She got ME/CFS when she was 24 according to this article that I do not have an account for:

https://www.telegraph.co.uk/culture/hay-festival/8557386/Hay-festival-Yvette-Cooper-talks-of-battle-with-ME.html

She did, but also recovered in around a year. I wonder if it was more of a PVFS thing.

 

[Felis Catus]

@Lou B Lou has written about her

Post in thread 'UK House of Lords/ House of Commons - relevant people and questions'

Jul 21, 2026

Yvette Cooper has not helped us. Quite the opposite. Anything she writes or does to help us now will have to contradict much of what she wrote about ME from the mid 1990s onwards.

In a number of interviews since 1996 she confidently told journalists that in her experience, and her consultant told her, that 90% of ME patients "recover and it never comes back."

The Guardian 2010:

'In her mid-20s Cooper suffered ME, and there have been suggestions that she did not challenge for the leadership because she was worried the stress might lead to a recurrence. No, she says...

• Lou B Lou

• 

Not sure she's our friend.

I'm too ill to engage more today. Perhaps there's more about her on the forum.

 

[Utsikt]

@Lou B Lou has written about her

Post in thread 'UK House of Lords/ House of Commons - relevant people and questions'

Jul 21, 2026

Yvette Cooper has not helped us. Quite the opposite. Anything she writes or does to help us now will have to contradict much of what she wrote about ME from the mid 1990s onwards.

In a number of interviews since 1996 she confidently told journalists that in her experience, and her consultant told her, that 90% of ME patients "recover and it never comes back."

The Guardian 2010:

'In her mid-20s Cooper suffered ME, and there have been suggestions that she did not challenge for the leadership because she was worried the stress might lead to a recurrence. No, she says...

• Lou B Lou

• 

Not sure she's our friend.

I'm too ill to engage more today. Perhaps there's more about her on the forum.

Most people that get post-viral fatigue do recover, and it’s probably very difficult if not impossible to distinguish PVF/PVFS from ME/CFS early on. It might even be part of the same overall group.

We can acknowledge that while also being very clear about some people not recovering, and that they desperately need help. And that CBT, GET, brain retraining, supplements or whatever doesn’t do anything as far as we cal tell.

 

[Robert 1973]

She got ME/CFS when she was 24 according to this article that I do not have an account for:

https://www.telegraph.co.uk/culture/hay-festival/8557386/Hay-festival-Yvette-Cooper-talks-of-battle-with-ME.html

This article is available on the MEA website: https://meassociation.org.uk/2011/0...-battle-with-me-sunday-telegraph-5-june-2011/

There is also "ME Association’s statement on the appointment of Yvette Cooper as Secretary of State for Health and Social Care" here:

ME Association's statement on the appointment of Yvette Cooper as Secretary of State for Health and Social Care - The ME Association

Read the ME Association's response to Yvette Cooper's appointment as Health Secretary and why urgent action on ME/CFS is needed. Learn more.

meassociation.org.uk

Comment on Yvette Cooper elsewhere on on another thread from 2018:

Then there was Yvette Cooper misquoting Dr Weir by saying most people will recover in a year. He actually said most people who are going to recover will have recovered within a year (paraphrasing). It may seem innocuous, but when we desperately want research and funding and a recovered ME patient and MP says that....why would you invest if people just recover of their own accord within a year?

 

[Utsikt]

Thank you!

Comment on Yvette Cooper elsewhere on on another thread from 2018:

I think both can be true: most recover within a year (or two), and most that will recover do so within a year (or two).

 

[Eleanor]

She wrote this rather confused piece in 1996 https://www.independent.co.uk/incoming/tired-of-all-this-miserable-me-stuff-5597991.html

Aaargh. Not another moaning article about ME. ... If it isn't some cynic sneering at "yuppie" malingerers, it's the dismal story of a sufferer condemned to year after dreary year of inactivity. But don't worry. I promise the next 1,000 words will be a drone-free zone.

In my case, the suffocating fatigue took three years finally to lift. ... After 12 months, as I started to recover and began working part time, my strength slowly grew. After two years, I returned tentatively to full-time work...

Faced with a sceptical public, and a media caricature of the illness as yuppie 'flu, the reaction from ME support groups is perhaps understandable. To convince us the illness is real and awful they provide us with gloomy case studies of people confined to their houses for years. ... Unfortunately such gloom-mongering is counter-productive. A potentially sympathetic audience is turned off by the portrayal of CFS sufferers as victims. What starts as pity for their terrible plight turns quickly to contempt and boredom.

I hope she has become better informed since then, or that someone is able to give her a more up-to-date picture now.