V.R.T.
Senior Member (Voting Rights)
Made a similar calculation and came to the same conclusion
United Kingdom: Sussex & Kent ME/CFS Society News
- Thread starter MeSci
- Start date
Made a similar calculation and came to the same conclusion
rvallee
Senior Member (Voting Rights)
It says nothing, basically the health rando equivalent of a sports commentator who says:
So, there, you pretty much read the whole thing. I have no idea what point anyone involved think they are making, but they sure are making it clear that their opinion is of no relevance whatsoever. It's an excerpt from Rethinking 'Recovery': A Comparative Qualitative Analyses of Experiences of Intensive Care With Covid and Long Covid in UK - Maclean et al - 2025.
Honestly, alternative medicine is eating medicine's lunch. Because medicine basically decided, "hey, why not just give it to them, what do we have to lose? It's not even our own lunch anyway, we just get this handed to us regardless of what we do with it, so fuck it." It's like seeing the nightmare regression in politics, how advanced technology is being used to bring pre-Enlightenment ideas and policies back. Except it's not done by the general public being manipulated, it's done by the experts themselves. Absolutely baffling.
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Dolphin
Senior Member (Voting Rights)
Source: Sussex & Kent ME/CFS Society
Date: July 25, 2025
URL: https://measussex.org.uk
ME/CFS doctors comment on prognosis
-----------------------------------
Dr Alan Stewart
Successful treatment depends upon a correct diagnosis and matching the treatment to suit the patient’s circumstances. This ideally addresses all of the predisposing, precipitating and in particular perpetuating factors in the patients CFS/ME. Accordingly the response rate and time frame are very variable.
That said, for some patients whose illness has followed an acute infection recovery may be relatively quick. Having an experienced and well-staffed team is essential.
Professor Anthony Komaroff (US)
People with ME/CFS usually experience their most severe symptoms in the first one to two years of illness. After that time, a small number of people recover totally, and others slowly improve their ability to function but do not recover fully. Unfortunately, a small number become totally incapacitated. For most people there is gradual improvement, although they usually cannot achieve the same activity level that they were capable of before becoming ill.
Professor Anthony J Pinching
Prognosis is variable and unpredictable. Quite a lot of people who become ill after infections can recover relatively soon (in a year or so), especially if diagnosed and managed early. But others may take longer to recover, either because their illness is more severe/prolonged, or because other factors interfere with the process of recovery and healing.
Although most people do gradually improve and adjust to the remaining restrictions, a significant minority remain severely affected for long periods.
Dr Vikki McKeever
The concept of recovery in ME/CFS is as complicated and heterogenous as the illness is ME/CFS is a condition currently defined and diagnosed based on the presence of specific symptoms which arise due to altered function in multiple dynamic physiological body systems. The reasons why these physiological systems become dysregulated varies and there are often multiple factors that have contributed. This means management of ME/CFS needs to be individualised and holistic and will need to address different issues for different people with the illness.
There are some people with ME/CFS who’s symptoms improve and some who recover back to a relatively normal level of function, including those who have been severely affected. However, the strategies that worked for one person may be ineffective for another and we do not yet have any way of predicting who will improve and why some people become more severely affected. It is a tricky balance to provide hope and optimism whilst also recognising the importance of being realistic and the need to continue management strategies in the long-term.
We must also acknowledge there are people with ME/CFS who remain severely affected for many years and that reflects our inadequate knowledge and treatment of this complex and life-changing illness.
Dr Alastair Miller – Consultant Physician Recovery from MECFS is extremely variable and will be affected by a number of factors. It is essential that those affected by MECFS are aware that full recovery is possible whatever the severity of the condition.
Dr Gabrielle Murphy – Consultant Physician Management approaches vary and should always be collaborative between health professional(s) of any discipline and the patient. Whether the illness is mild, moderate or severe, or vacillates between the different categories, most of those affected report that support from a specialist unit is always welcome.
Dr Sue Pemberton
Prognosis can be complex and means that it can vary widely across the same illness. Some people can find that with the right guidance they can stabilise their condition and that this may mean there is opportunity to make slow, careful changes in their daily activity, but this may not be back to the lifestyle they had before their illness.
Dr Jake Hollis
I am more optimistic than many about the possibility of recovery from ME/CFS. This is, no doubt, influenced by my own experience of having been housebound and barely able to sit up a few years ago, to now being fully recovered and able to work, travel and exercise. My optimism is also influenced by the recovery progress I see in many clients I work with, and the growing network of people I know who have recovered.
While this condition is undoubtedly complex and multifactorial, in my view it is best understood as a state of extreme dysregulation across multiple bodily systems. The upshot of this understanding is that it nudges us towards creating the conditions to support the body to shift away from dysregulation and towards greater regulation.
Date: July 25, 2025
URL: https://measussex.org.uk
ME/CFS doctors comment on prognosis
-----------------------------------
Dr Alan Stewart
Successful treatment depends upon a correct diagnosis and matching the treatment to suit the patient’s circumstances. This ideally addresses all of the predisposing, precipitating and in particular perpetuating factors in the patients CFS/ME. Accordingly the response rate and time frame are very variable.
That said, for some patients whose illness has followed an acute infection recovery may be relatively quick. Having an experienced and well-staffed team is essential.
Professor Anthony Komaroff (US)
People with ME/CFS usually experience their most severe symptoms in the first one to two years of illness. After that time, a small number of people recover totally, and others slowly improve their ability to function but do not recover fully. Unfortunately, a small number become totally incapacitated. For most people there is gradual improvement, although they usually cannot achieve the same activity level that they were capable of before becoming ill.
Professor Anthony J Pinching
Prognosis is variable and unpredictable. Quite a lot of people who become ill after infections can recover relatively soon (in a year or so), especially if diagnosed and managed early. But others may take longer to recover, either because their illness is more severe/prolonged, or because other factors interfere with the process of recovery and healing.
Although most people do gradually improve and adjust to the remaining restrictions, a significant minority remain severely affected for long periods.
Dr Vikki McKeever
The concept of recovery in ME/CFS is as complicated and heterogenous as the illness is ME/CFS is a condition currently defined and diagnosed based on the presence of specific symptoms which arise due to altered function in multiple dynamic physiological body systems. The reasons why these physiological systems become dysregulated varies and there are often multiple factors that have contributed. This means management of ME/CFS needs to be individualised and holistic and will need to address different issues for different people with the illness.
There are some people with ME/CFS who’s symptoms improve and some who recover back to a relatively normal level of function, including those who have been severely affected. However, the strategies that worked for one person may be ineffective for another and we do not yet have any way of predicting who will improve and why some people become more severely affected. It is a tricky balance to provide hope and optimism whilst also recognising the importance of being realistic and the need to continue management strategies in the long-term.
We must also acknowledge there are people with ME/CFS who remain severely affected for many years and that reflects our inadequate knowledge and treatment of this complex and life-changing illness.
Dr Alastair Miller – Consultant Physician Recovery from MECFS is extremely variable and will be affected by a number of factors. It is essential that those affected by MECFS are aware that full recovery is possible whatever the severity of the condition.
Dr Gabrielle Murphy – Consultant Physician Management approaches vary and should always be collaborative between health professional(s) of any discipline and the patient. Whether the illness is mild, moderate or severe, or vacillates between the different categories, most of those affected report that support from a specialist unit is always welcome.
Dr Sue Pemberton
Prognosis can be complex and means that it can vary widely across the same illness. Some people can find that with the right guidance they can stabilise their condition and that this may mean there is opportunity to make slow, careful changes in their daily activity, but this may not be back to the lifestyle they had before their illness.
Dr Jake Hollis
I am more optimistic than many about the possibility of recovery from ME/CFS. This is, no doubt, influenced by my own experience of having been housebound and barely able to sit up a few years ago, to now being fully recovered and able to work, travel and exercise. My optimism is also influenced by the recovery progress I see in many clients I work with, and the growing network of people I know who have recovered.
While this condition is undoubtedly complex and multifactorial, in my view it is best understood as a state of extreme dysregulation across multiple bodily systems. The upshot of this understanding is that it nudges us towards creating the conditions to support the body to shift away from dysregulation and towards greater regulation.
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Utsikt
Senior Member (Voting Rights)
I asked ChatGPT to remove the linebreaks to make it easier to read. I’ve also added bolding to the names and added some line breaks on my own.
Dr Alan Stewart
Successful treatment depends upon a correct diagnosis and matching the treatment to suit the patient’s circumstances. This ideally addresses all of the predisposing, precipitating and in particular perpetuating factors in the patients CFS/ME. Accordingly the response rate and time frame are very variable.
That said, for some patients whose illness has followed an acute infection recovery may be relatively quick. Having an experienced and well-staffed team is essential.
Professor Anthony Komaroff (US)
People with ME/CFS usually experience their most severe symptoms in the first one to two years of illness. After that time, a small number of people recover totally, and others slowly improve their ability to function but do not recover fully. Unfortunately, a small number become totally incapacitated. For most people there is gradual improvement, although they usually cannot achieve the same activity level that they were capable of before becoming ill.
Professor Anthony J Pinching
Prognosis is variable and unpredictable. Quite a lot of people who become ill after infections can recover relatively soon (in a year or so), especially if diagnosed and managed early. But others may take longer to recover, either because their illness is more severe/prolonged, or because other factors interfere with the process of recovery and healing.
Although most people do gradually improve and adjust to the remaining restrictions, a significant minority remain severely affected for long periods.
Dr Vikki McKeever
The concept of recovery in ME/CFS is as complicated and heterogenous as the illness is ME/CFS is a condition currently defined and diagnosed based on the presence of specific symptoms which arise due to altered function in multiple dynamic physiological body systems. The reasons why these physiological systems become dysregulated varies and there are often multiple factors that have contributed. This means management of ME/CFS needs to be individualised and holistic and will need to address different issues for different people with the illness.
There are some people with ME/CFS who’s symptoms improve and some who recover back to a relatively normal level of function, including those who have been severely affected. However, the strategies that worked for one person may be ineffective for another and we do not yet have any way of predicting who will improve and why some people become more severely affected. It is a tricky balance to provide hope and optimism whilst also recognising the importance of being realistic and the need to continue management strategies in the long-term.
We must also acknowledge there are people with ME/CFS who remain severely affected for many years and that reflects our inadequate knowledge and treatment of this complex and life-changing illness.
Dr Alastair Miller – Consultant Physician Recovery from MECFS is extremely variable and will be affected by a number of factors. It is essential that those affected by MECFS are aware that full recovery is possible whatever the severity of the condition.
Dr Gabrielle Murphy – Consultant Physician Management approaches vary and should always be collaborative between health professional(s) of any discipline and the patient. Whether the illness is mild, moderate or severe, or vacillates between the different categories, most of those affected report that support from a specialist unit is always welcome.
Dr Sue Pemberton
Prognosis can be complex and means that it can vary widely across the same illness. Some people can find that with the right guidance they can stabilise their condition and that this may mean there is opportunity to make slow, careful changes in their daily activity, but this may not be back to the lifestyle they had before their illness.
Dr Jake Hollis
I am more optimistic than many about the possibility of recovery from ME/CFS. This is, no doubt, influenced by my own experience of having been housebound and barely able to sit up a few years ago, to now being fully recovered and able to work, travel and exercise. My optimism is also influenced by the recovery progress I see in many clients I work with, and the growing network of people I know who have recovered.
While this condition is undoubtedly complex and multifactorial, in my view it is best understood as a state of extreme dysregulation across multiple bodily systems. The upshot of this understanding is that it nudges us towards creating the conditions to support the body to shift away from dysregulation and towards greater regulation.
Successful treatment depends upon a correct diagnosis and matching the treatment to suit the patient’s circumstances. This ideally addresses all of the predisposing, precipitating and in particular perpetuating factors in the patients CFS/ME. Accordingly the response rate and time frame are very variable.
That said, for some patients whose illness has followed an acute infection recovery may be relatively quick. Having an experienced and well-staffed team is essential.
Professor Anthony Komaroff (US)
People with ME/CFS usually experience their most severe symptoms in the first one to two years of illness. After that time, a small number of people recover totally, and others slowly improve their ability to function but do not recover fully. Unfortunately, a small number become totally incapacitated. For most people there is gradual improvement, although they usually cannot achieve the same activity level that they were capable of before becoming ill.
Professor Anthony J Pinching
Prognosis is variable and unpredictable. Quite a lot of people who become ill after infections can recover relatively soon (in a year or so), especially if diagnosed and managed early. But others may take longer to recover, either because their illness is more severe/prolonged, or because other factors interfere with the process of recovery and healing.
Although most people do gradually improve and adjust to the remaining restrictions, a significant minority remain severely affected for long periods.
Dr Vikki McKeever
The concept of recovery in ME/CFS is as complicated and heterogenous as the illness is ME/CFS is a condition currently defined and diagnosed based on the presence of specific symptoms which arise due to altered function in multiple dynamic physiological body systems. The reasons why these physiological systems become dysregulated varies and there are often multiple factors that have contributed. This means management of ME/CFS needs to be individualised and holistic and will need to address different issues for different people with the illness.
There are some people with ME/CFS who’s symptoms improve and some who recover back to a relatively normal level of function, including those who have been severely affected. However, the strategies that worked for one person may be ineffective for another and we do not yet have any way of predicting who will improve and why some people become more severely affected. It is a tricky balance to provide hope and optimism whilst also recognising the importance of being realistic and the need to continue management strategies in the long-term.
We must also acknowledge there are people with ME/CFS who remain severely affected for many years and that reflects our inadequate knowledge and treatment of this complex and life-changing illness.
Dr Alastair Miller – Consultant Physician Recovery from MECFS is extremely variable and will be affected by a number of factors. It is essential that those affected by MECFS are aware that full recovery is possible whatever the severity of the condition.
Dr Gabrielle Murphy – Consultant Physician Management approaches vary and should always be collaborative between health professional(s) of any discipline and the patient. Whether the illness is mild, moderate or severe, or vacillates between the different categories, most of those affected report that support from a specialist unit is always welcome.
Dr Sue Pemberton
Prognosis can be complex and means that it can vary widely across the same illness. Some people can find that with the right guidance they can stabilise their condition and that this may mean there is opportunity to make slow, careful changes in their daily activity, but this may not be back to the lifestyle they had before their illness.
Dr Jake Hollis
I am more optimistic than many about the possibility of recovery from ME/CFS. This is, no doubt, influenced by my own experience of having been housebound and barely able to sit up a few years ago, to now being fully recovered and able to work, travel and exercise. My optimism is also influenced by the recovery progress I see in many clients I work with, and the growing network of people I know who have recovered.
While this condition is undoubtedly complex and multifactorial, in my view it is best understood as a state of extreme dysregulation across multiple bodily systems. The upshot of this understanding is that it nudges us towards creating the conditions to support the body to shift away from dysregulation and towards greater regulation.
Dolphin
Senior Member (Voting Rights)
I’ve copied that into the original post.
Tree
Senior Member (Voting Rights)
Shared talking points from all
- recovery is possible (reality: rare)
- very complex
- need individual approach
Shared talking points for most
- holistic / collaborative care needed
Jonathan Edwards
Senior Member (Voting Rights)
That is the nub.
I am hoping to produce a draft for a factsheet designed for medical professionals over the next week. I think i need to include clear counterarguments to things like the above, use of terms like functional and medically unexplained and the BSG nonsense on feeding. Hopefully others can help me remember all the things that need to go in.
Peter T
Senior Member (Voting Rights)
I was wondering if the Sussex and Kent group provided the patient input that BACME cite in their output. I seem to recollect that Prof Crawley, in addition to her own paediatric parents group, used this group to provide patient/carer input to her research in relation to adults, though I may be mis remembering.
The group has?had a disconcertingly large number of medical advisors, more than any of the national charities, a number of whom had no obvious links to either Kent or Sussex. One wonders what these eminent researchers get out of developing close links with a local charity in another part of the country other than its support for the misleadingly named BPS approach to ME/CFS.
The group has?had a disconcertingly large number of medical advisors, more than any of the national charities, a number of whom had no obvious links to either Kent or Sussex. One wonders what these eminent researchers get out of developing close links with a local charity in another part of the country other than its support for the misleadingly named BPS approach to ME/CFS.
Lou B Lou
Senior Member (Voting Rights)
The Sussex Group has form. In 2004/5 The Sussex Chair organised and hosted a public meeting for Peter D White (PACE) and Dr Maurice Murphy (Bart's 'CFS' Service) to promote the (yet to be established) 'CFS' Services/CBT-GET clinics. To get 'the patients' on board. Using Sussex patients to claim 'the patients' were in favour of establishing 'CFS' clinics. Mr Barton and Sussex Society charity officials allowed questions from the floor from only selected 'safe' questioners. The meeting was heavily managed.
CB and the Sussex Society also do all 'negotiations' for local services. The actual Sussex ME patients never have a say and don't stand a chance.
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Nightsong
Senior Member (Voting Rights)
BACME has a small group of their own patient representatives, including a former secondary school teacher, a former life coach, and the father of a young woman with ME/CFS. Their "PPI lead" is a former speech & language therapist; some of their PPI group are also BACME board members. Barton has long been involved with them and once served on BACME's "Executive".
I've been looking recently at what is in recent textbooks - the stuff in the Oxford Handbook of Clinical Medicine is truly dire, and in the Handbook of Clinical Specialties the CFS section seems to have been removed & a MUS section added in the 11th edition. It may be a good idea to address some of what is there, including the very basics such as why ME/CFS should be regarded as a discrete syndrome. BACME produces a lot of nonsense but many of their ideas are simply not where most medical professionals are.
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Jonathan Edwards
Senior Member (Voting Rights)
I look forward to your assistance @Nightsong
Dolphin
Senior Member (Voting Rights)
Sussex & Kent ME/CFS Society PO Box 309 Brighton BN50 9FR 01273 674828
Prestige Award 2025
The Brighton based Sussex & Kent ME Society is delighted to announce that they have won the Prestige Award 2025 under the category of Illness Support NPO for the South East of England.
The charity has worked tirelessly for those who have been affected by Myalgic encephalomyelitis (ME) also known as Chronic fatigue syndrome (CFS) for over 35 years and continues to work closely with NHS specialist services that the organisation helped establish some years ago while consulting with the Sussex heath authorities.
The Prestige judging panel base their decisions upon areas such as service excellence, quality of the product/service provided, innovative practices, value, ethical or sustainable methods of working, as well as consistency in performance. The winners selected are those who can best demonstrate their strengths in these areas. All winners are featured in a celebratory awards magazine, published both digitally and in print, which is circulated to Prestige subscribers.
Colin Barton, ME Society chair says: We are so pleased to have our work acknowledged in this way and are pleased to say that some of those affected by ME/CFS can make significant improvements even though others remain housebound and in need of care.
www.measussex.org.uk
www.facebook.com
Prestige Award 2025
The Brighton based Sussex & Kent ME Society is delighted to announce that they have won the Prestige Award 2025 under the category of Illness Support NPO for the South East of England.
The charity has worked tirelessly for those who have been affected by Myalgic encephalomyelitis (ME) also known as Chronic fatigue syndrome (CFS) for over 35 years and continues to work closely with NHS specialist services that the organisation helped establish some years ago while consulting with the Sussex heath authorities.
The Prestige judging panel base their decisions upon areas such as service excellence, quality of the product/service provided, innovative practices, value, ethical or sustainable methods of working, as well as consistency in performance. The winners selected are those who can best demonstrate their strengths in these areas. All winners are featured in a celebratory awards magazine, published both digitally and in print, which is circulated to Prestige subscribers.
Colin Barton, ME Society chair says: We are so pleased to have our work acknowledged in this way and are pleased to say that some of those affected by ME/CFS can make significant improvements even though others remain housebound and in need of care.
www.measussex.org.uk
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Lou B Lou
Senior Member (Voting Rights)
Sussex & Kent ME/CFS Society PO Box 309 Brighton BN50 9FR 01273 674828
Prestige Award 2025
The Brighton based Sussex & Kent ME Society is delighted to announce that they have won the Prestige Award 2025 under the category of Illness Support NPO for the South East of England.
The charity has worked tirelessly for those who have been affected by Myalgic encephalomyelitis (ME) also known as Chronic fatigue syndrome (CFS) for over 35 years and continues to work closely with NHS specialist services that the organisation helped establish some years ago while consulting with the Sussex heath authorities.
The Prestige judging panel base their decisions upon areas such as service excellence, quality of the product/service provided, innovative practices, value, ethical or sustainable methods of working, as well as consistency in performance. The winners selected are those who can best demonstrate their strengths in these areas. All winners are featured in a celebratory awards magazine, published both digitally and in print, which is circulated to Prestige subscribers.
Colin Barton, ME Society chair says: We are so pleased to have our work acknowledged in this way and are pleased to say that some of those affected by ME/CFS can make significant improvements even though others remain housebound and in need of care.
www.measussex.org.uk
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Log in to Facebook to start sharing and connecting with your friends, family and people you know.
Pass the sick bucket.
Note Colin Barton reinforcing his Society's near slogan of 'some of those affected can make significant improvements'
.... while his 'ME/CFS' Society abandons all people with ME who don't improve, especially the most severely sick, who are not useful to CB's agenda of sucking up to, aiding, the psycho-behavioural lobby.
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