Open UK BACME tube feeding survey 2025, closes 30th September 2025

InitialConditions

Senior Member (Voting Rights)
BACME are currently conducting a survey exploring the experience of people living with ME/CFS in the UK who have required tube feeding at some point in their illness.


A very small number of people living with ME/CFS develop nutrition related problems severe enough to be considered for tube feeing. There are many possible, different, complex and inter-related problems that can lead to someone living with ME/CFS not being able to maintain adequate nutrition. We are aware this aspect of ME/CFS treatment and care is not well resourced within the NHS. This means there are very few ME/CFS specialist dietitians and insufficient medical staff with a good understanding of ME/CFS, leading to many patients struggling to access good quality and timely care.


There is no ME/CFS specific nutrition guidance available for clinicians. This is an area of treatment and care that BACME is hoping to develop in collaboration with nutrition specialist organisations.


As we do not have robust evidence from research studies to base guidance on, the experience of those who have lived experience of needing tube feeding will be invaluable to help inform the development of a clinical guideline.


To understand the difficulties and successes from all perspectives we also want to hear from any carers (paid and unpaid) involved at the time tube feeding was needed.


We also need to understand the experiences of clinical staff so want to hear from clinicians from all backgrounds including:


  • Hospital staff e.g. gastroenterologists, dietitians, nurses etc
  • Community staff e.g. home feeding teams, therapists etc
  • Primary care staff e.g. GPs, district nurses etc
  • Specialist ME/CFS service clinicians




This survey focuses on the provision of nutrition via a tube e.g. nasogastric (NG), nasojejunal (NJ), percutaneous endoscopic gastrostomy (PEG) or parenteral feeding (via a drip into a blood vessel). This survey does not ask questions related to other forms of nutrition support, such as food enrichment or prescribed fortified drinks/soups etc.


The survey questions have been developed with valuable input from people living with severe ME/CFS. We are very grateful for the time and energy they have given to support this project.


BACME will produce a survey report including a commentary on the responses received. The report will be written in collaboration with people living with ME/CFS, carers and clinicians. The report will be published on the BACME website and shared with other organisations.


We are aware that reflecting on times when life has been extremely challenging is emotionally demanding, which will make completing the survey difficult for some people. People living with ME/CFS are welcome to seek support from those around them to facilitate their completion of the survey.


We have focused the questions to cover areas of highest priority for future guideline development. There are free text boxes available for most questions. We are hoping people will be able to provide some further narrative about their experiences that may not fit neatly within the questions. These will be helpful in providing wider insights.


All survey responses will be kept anonymous.


Completing the survey


The survey can be completed by people living in the UK who have direct experience of tube feeding from the perspective of:


  • A person living with ME/CFS who is receiving or received tube feeding in the past
  • A carer of a person with ME/CFS who required tube feeding
  • A clinician who has been involved in the care of someone with ME/CFS receiving tube feeding




We expect the questions to take around 10-20 minutes to complete, this will likely be longer if you are able to provide additional free-text responses.


  • People with ME – 40 questions (divided into 4 pages)
  • Carers – 11 questions
  • Clinicians – 24 questions (divided into 3 pages)

The survey can only be completed once by each individual. It is possible to leave the survey and return to it and edit it from the same device up until completing the survey. Answers will only be saved if the page is completed by clicking on ‘Next’. Once ‘Done’ is clicked at the end you won’t be able to return to the survey.


If members of the same household want to complete the survey they will each need to access it from a different device (e.g. phone, iPad, laptop, PC).


We are able to provide a PDF copy of the survey questions which can be printed, completed manually and then scanned or photographed and emailed back to us. Please get in touch at info@bacme.info if you want a PDF copy emailing to you.


We would really appreciate it if people completing the survey share it with other people who were involved e.g. passing it on to clinical staff or professional carers/agencies involved at the time the tube feeding was being provided.


If you have any further questions or comments about this survey please contact us at info@bacme.info


The survey will remain open until 30th September 2025

LINK TO SURVEY
 
BACME are currently conducting a survey exploring the experience of people living with ME/CFS in the UK who have required tube feeding at some point in their illness.


A very small number of people living with ME/CFS develop nutrition related problems severe enough to be considered for tube feeing. There are many possible, different, complex and inter-related problems that can lead to someone living with ME/CFS not being able to maintain adequate nutrition. We are aware this aspect of ME/CFS treatment and care is not well resourced within the NHS. This means there are very few ME/CFS specialist dietitians and insufficient medical staff with a good understanding of ME/CFS, leading to many patients struggling to access good quality and timely care.


There is no ME/CFS specific nutrition guidance available for clinicians. This is an area of treatment and care that BACME is hoping to develop in collaboration with nutrition specialist organisations.


As we do not have robust evidence from research studies to base guidance on, the experience of those who have lived experience of needing tube feeding will be invaluable to help inform the development of a clinical guideline.


To understand the difficulties and successes from all perspectives we also want to hear from any carers (paid and unpaid) involved at the time tube feeding was needed.


We also need to understand the experiences of clinical staff so want to hear from clinicians from all backgrounds including:


  • Hospital staff e.g. gastroenterologists, dietitians, nurses etc
  • Community staff e.g. home feeding teams, therapists etc
  • Primary care staff e.g. GPs, district nurses etc
  • Specialist ME/CFS service clinicians




This survey focuses on the provision of nutrition via a tube e.g. nasogastric (NG), nasojejunal (NJ), percutaneous endoscopic gastrostomy (PEG) or parenteral feeding (via a drip into a blood vessel). This survey does not ask questions related to other forms of nutrition support, such as food enrichment or prescribed fortified drinks/soups etc.


The survey questions have been developed with valuable input from people living with severe ME/CFS. We are very grateful for the time and energy they have given to support this project.


BACME will produce a survey report including a commentary on the responses received. The report will be written in collaboration with people living with ME/CFS, carers and clinicians. The report will be published on the BACME website and shared with other organisations.


We are aware that reflecting on times when life has been extremely challenging is emotionally demanding, which will make completing the survey difficult for some people. People living with ME/CFS are welcome to seek support from those around them to facilitate their completion of the survey.


We have focused the questions to cover areas of highest priority for future guideline development. There are free text boxes available for most questions. We are hoping people will be able to provide some further narrative about their experiences that may not fit neatly within the questions. These will be helpful in providing wider insights.


All survey responses will be kept anonymous.


Completing the survey


The survey can be completed by people living in the UK who have direct experience of tube feeding from the perspective of:


  • A person living with ME/CFS who is receiving or received tube feeding in the past
  • A carer of a person with ME/CFS who required tube feeding
  • A clinician who has been involved in the care of someone with ME/CFS receiving tube feeding




We expect the questions to take around 10-20 minutes to complete, this will likely be longer if you are able to provide additional free-text responses.


  • People with ME – 40 questions (divided into 4 pages)
  • Carers – 11 questions
  • Clinicians – 24 questions (divided into 3 pages)

The survey can only be completed once by each individual. It is possible to leave the survey and return to it and edit it from the same device up until completing the survey. Answers will only be saved if the page is completed by clicking on ‘Next’. Once ‘Done’ is clicked at the end you won’t be able to return to the survey.


If members of the same household want to complete the survey they will each need to access it from a different device (e.g. phone, iPad, laptop, PC).


We are able to provide a PDF copy of the survey questions which can be printed, completed manually and then scanned or photographed and emailed back to us. Please get in touch at info@bacme.info if you want a PDF copy emailing to you.


We would really appreciate it if people completing the survey share it with other people who were involved e.g. passing it on to clinical staff or professional carers/agencies involved at the time the tube feeding was being provided.


If you have any further questions or comments about this survey please contact us at info@bacme.info


The survey will remain open until 30th September 2025

LINK TO SURVEY
This is very needed but I trust BACME about as far as I can throw them.
 
This is very needed but I trust BACME about as far as I can throw them.

Yes, my initial response was much the same.

I doubt the basic nutritional needs are different to other people needing tube feeding, but we need research about modes of feeding, body positioning and rates of intake. However the NHS would have to accept that evidence from replicated clinical trials isn't going to be forthcoming.

A small network of open-minded physicians and nutritionists could learn a lot from a handful of scattered cases, though, specially as the bulk of the new knowledge required isn't really about feeding. It's about how to look after and communicate with people with very severe ME/CFS, and ensure they're not made so ill by environmental stressors that their ability to tolerate food could be impacted.
 
This is very needed but I trust BACME about as far as I can throw them.
Suddenly, after all this time since 7 October 2024!

Please note:

  • This is NOT part of the public consultation process, although it is designed to look the same. That is officially closed.
  • It is therefore research in this context, into a group of patients where there are significant patient safety concerns, which requires informed consent. THere is no mention of it in the 'survey'.

Think implementation task and Finish Group, Final Delivery Plan, the fact no publicly available research into very severe ME/CFS has taken place.

NIHR HERITAGE - this will be producing a National Service Framework which will be signed off by SoS Wes Streeting 9normal procedure), and it will also be producing educational materials. Based on what?

This is an area of treatment and care that BACME is hoping to develop in collaboration with nutrition specialist organisations.

As we do not have robust evidence from research studies to base guidance on, the experience of those who have lived experience of needing tube feeding will be invaluable to help inform the development of a clinical guideline.

We are aware that reflecting on times when life has been extremely challenging is emotionally demanding, which will make completing the survey difficult for some people. People living with ME/CFS are welcome to seek support from those around them to facilitate their completion of the survey.
'are welcome'. That would be following the NICE Guideline ng206 which states

1.17 Care for people with severe or very severe ME/CFS​

This section supplements the rest of the guideline with additional considerations for people with severe or very severe ME/CFS.

  • cannot communicate without support and may need to choose someone to be their advocate and communicate for them


People living with ME/CFS are welcome to seek support from those around them to facilitate their completion of the survey.

We have focused the questions to cover areas of highest priority for future guideline development. There are free text boxes available for most questions. We are hoping people will be able to provide some further narrative about their experiences that may not fit neatly within the questions. These will be helpful in providing wider insights.
Who has been invited to the join the Task and Finish Group on this, because up to last week the patient and charity stakeholders previously involved didn't seem to know if they would be invited.

This is very needed - but done properly. For example, is this a stop gap measure while we all wait for the HERITAGE Programme to produce at some unknown point in the future?

Then of course, later the survey results will form part of the NSF? Is that the plan? Based on what has been produced so far by BACME and the Survey is already Live, it could be seriously challenged on the grounds that patient and carer participants (the only ones who really matter here) have been unable to give fully informed consent to it.

But then it saves HERITAGE on conducting any research with PPI. Unless, they already plan to, but I didn't see it transparently set out in the Final Delivery. I could ,have missed it though.
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A very small number of people living with ME/CFS develop nutrition related problems severe enough to be considered for tube feeing.
More than actually get tube fed anyway given the number of deaths from starvation. I dislike this framing a lot, it presumes the only people who can participate are those that got tube feed not those that needed it, some of which have survived or are currently surviving without sufficient nutrition. This is an ongoing crisis.
 
BACME are such a problematic org. They supported a rehab/ psych approach that disabled people & deterred research.Their woeful clinics openly excluded the 25% severe +were happily non medical etc so the only specialist available for the severe but most disturbingly for crisis cases, has been an OT.

Are they calling for physician-led ME services generally Or just dietician / medical support for this particular issue / complication associated with very severe M.E? This would support the status quo + app + GP approach preferred by the NHS, with just this glaring need covered but in my opinion, not provide the type of ongoing medical care, physician-led services the broader 25% severe ME group would probably wish for, if asked.
The DHSC delivery plan apparently largely ignored the severely affected but proposed exploring further for very severe m.e care , is this part of it?

Obviously, the complex nature of severe ME tube-Feeding requirements needs experience drawn on & provision to avoid repeat disasters (not “just” deaths) and I didn’t understand the brevity in the NICE guidelines. 3 people who died had bodies that couldn’t tolerate normal tube feeding. I suspect all who’ve had a tube have had an immense battle to get it and possibly harm through that as well as likely bad care causing their m.e to progress or fall to those severe depths in the first place, as has been the case for most of the nutrition or extreme m.e deaths in the news from Lynn gilderdale onwards. What was the role of the nhs Minimal-therapist service set up & lack of severe ME biomedical research in all that? Probably large and who was feeding that, the BACME types.

I feel like the continuing BACME provider role and patients being encouraged to work with them, as they’re switched 130 degrees , without accountability taken for the mess, harm, neglect , scandal of m.e past 20 years, especially severe m.e . is like facilitating the NHS etc in what I perceive to be a state cover up of institutional failure and an ongoing avoidance of providing wider severe ME and General m,e medical care.
 
BACME are such a problematic org. They supported a rehab/ psych approach that disabled people & deterred research.Their woeful clinics openly excluded the 25% severe +were happily non medical etc so the only specialist available for the severe but most disturbingly for crisis cases, has been an OT.

Are they calling for physician-led ME services generally Or just dietician / medical support for this particular issue / complication associated with very severe M.E? This would support the status quo + app + GP approach preferred by the NHS, with just this glaring need covered but in my opinion, not provide the type of ongoing medical care, physician-led services the broader 25% severe ME group would probably wish for, if asked.
The DHSC delivery plan apparently largely ignored the severely affected but proposed exploring further for very severe m.e care , is this part of it?

Obviously, the complex nature of severe ME tube-Feeding requirements needs experience drawn on & provision to avoid repeat disasters (not “just” deaths) and I didn’t understand the brevity in the NICE guidelines. 3 people who died had bodies that couldn’t tolerate normal tube feeding. I suspect all who’ve had a tube have had an immense battle to get it and possibly harm through that as well as likely bad care causing their m.e to progress or fall to those severe depths in the first place, as has been the case for most of the nutrition or extreme m.e deaths in the news from Lynn gilderdale onwards. What was the role of the nhs Minimal-therapist service set up & lack of severe ME biomedical research in all that? Probably large and who was feeding that, the BACME types.

I feel like the continuing BACME provider role and patients being encouraged to work with them, as they’re switched 130 degrees , without accountability taken for the mess, harm, neglect , scandal of m.e past 20 years, especially severe m.e . is like facilitating the NHS etc in what I perceive to be a state cover up of institutional failure and an ongoing avoidance of providing wider severe ME and General m,e medical care.
Hear, hear.
 
At least if BACME intend to put out some sort of policy statement that becomes something that can be responded to. I actually think BACME are slightly more on the same planet over this, than the gasroenterologists saying it is all functional stuff with EDS (however that works) and needs robust psychological support.
 
Just read through the survey form, and, though it was not as bad as I expected, it is very long for someone with very severe ME/CFS, and several questions intended to cover all options leave gaps that mean some people will it find difficult to answer them.

As @Trish pointed out there seems to be no option for people, who believe they need/needed non oral feeding but were refused it, to respond to this survey. Also though the issue of OI and positioning for non oral feeding is alluded to, the single question involved does not allow for the complexity of the issue, patient needs and various medical responses to be adequately covered.

Though this is presumably no longer an option and I need to reread the form perhaps several times more, ideally it would be further trialed with more people with ME/CFS with a view of identifying is gaps, and also it would help for a group such as ourselves discussing how it could be improved.
 
Having looked at the patient questions I am not even really sure what the purpose here is. Some of it could be useful like food intolerances leading up to the need for tube feeding but a lot of this is just obvious, of course people were being tube fed because they weren't getting enough nutrition that is the entire point of the tube feeding and yes it helped them survive. So many questions seem like there is only one practical answer. What I feel is that this questionnaire is trying to assess that many of the people tube fed didn't actually need it and a lot of the questions are attempts at gotcha moments. Way too many open text boxes for more details for any very severe person to be filling this out and lots of stuff that breaches anonymity.
 
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This is very needed but I trust BACME about as far as I can throw them.
It appears that the survey is being done with the Sussex and Kent ME/CFS Society; does not exactly inspire confidence.

Tube Feeding Survey​

By SMEAdmin On 14th August 2025

| No Comments

Working with the British Association of Clinicians in ME/CFS (BACME) we are running a survey for those living with Chronic fatigue syndrome/ME or clinicians involved in the care of someone with ME/CFS who has experience of needing tube feeding either currently or in the past. To complete the survey contact us through www.measussex.org.uk

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It is very long for someone with very severe ME/CFS
As usual with BACME my flabber is gasted.

They acknowledge that “We are aware that reflecting on times when life has been extremely challenging is emotionally demanding, which will make completing the survey difficult for some people” but not that for patients who are very severe, a survey taking “10-20 minutes to complete, this will likely be longer if you are able to provide additional free-text responses” is likely to have a major deleterious impact on their health.

It’s almost as if they’ve never met anyone with very severe ME. What are these people on?
 
As usual with BACME my flabber is gasted.

They acknowledge that “We are aware that reflecting on times when life has been extremely challenging is emotionally demanding, which will make completing the survey difficult for some people” but not that for patients who are very severe, a survey taking “10-20 minutes to complete, this will likely be longer if you are able to provide additional free-text responses” is likely to have a major deleterious impact on their health.

It’s almost as if they’ve never met anyone with very severe ME. What are these people on?
and for all that effort to get across what might be some extremely dangerous situations they have been in

then it needs to ONLY be people who can be trusted to actually hear and want to understand and take on board the lessons, not manipulate and twist it and potentially use that info to put people into further danger.

It's very inappropriate that there isn't an independent drafted in to do this.

And it is also frankly weird that we have no detail of what these people are going to do with this, what their mission is and WHY this survey has to be this way. Which is a major INFORMED CONSENT issue which is hugely obvious. YOu can't take data in normal circumstances without being upfront but we've some org with ideological issues demonstrated by a history and ongoing ostracising of patient's voices from anything that happened to them with their conferences or anything else being sponsored and helped to nick data again. How dare they.

Let's underline that what they currently do is NOT NORMAL or polite or normal etiquette, that they have a history of very bad and rude behaviour along the same lines and yet they feel entitled to carry on as if their own rudeness and harm caused and refusal to apologise further entitles them to hiding information and being manipulative. BACME has a huge attitude problem with regards autonomy over their own body or life too. These are major issues, not mild ones. And are frankly disgusting. And yet they wade in and expect people in danger to use health they can't spare to risk themselves handing over something to people who have a history of abusing that. And twisting it.

I use these terms all technically as factual and legal issues - not 'insults' as they like to play rhetoric with and pretend they are upset by, which is unprofessional as a distraction in itself. If someone brings up ethical issues as serious as this and someone instead of having the requisite concen then pretends they are all offended to get away with not discussing it they shouldn't be in those jobs anymore, I just find the whole thing so dystopian and childish and a sign of how little appreciation there is that these are real human beings with consequences that don't get more serious than this - not a game about them getting away with what they fancy doing in their job with how they treat people.

And having worked in areas where there wasn't much contention but people would ALWAYS know it had to be independent for the sake of trustworthiness, even when there was no reason for eg us to not be trusted other than us not being independent, it is just WEIRD someone would choose actively not to do what I think would be the NORM, and to decide to coerce 'its either this or you get no say because we are doing it anyway' go ahead regardless.

And it's just the usual narcissists charter when you get the yawn victim nonsense from these people with attitude problems (that's the issue with the people we have been dumped under - their personality and attitude stinks for anything that is brought up as exampled by what we have had any time there is feedback, and the gross 'we know you brought this up because we mention it whilst we do what we want anyway because our doing it the way works for us matters most') then pretending and playing that they are somehow hard done by when people who are being badly served by their bad work have to tactfully try and say anything.

Why aren't bystanders gobsmacked and jaws to the floor at their attitude. Well people wouldn't fill in a 20min survey to someone they didn't trust. Either one of those factors would mean a survey I released wouldn't get continued.

SO why do we keep getting coerced - which is the accurate term for this.

And remember why the research ethics stuff is called the Declaration of Helsinki. There are bad people out there and cultures where people end up doing very very bad things whilst deceiving themselves it isn't bad. So when you get people whose attitude is to hand-waive to the people they claim to help, every single time the same thing is brought up, and they make zero effort to adapt what is easiest for them - because the well, lazy people are the priority of having an easy life at the expense of the desperately ill and injured and harmed by them every, single time being expected to put themselves out hugely at risk and at harm .. and they still don't think they need to be spending time doing things significanlty better. Well I don't believe that they have good interests then.

And yes the Sussex and Kent group have a history of not having good interests for pwme. BACME and others involved have a history which is having done things which were harmful. So they have apologies to make and should be thinking they shouldn't dare expect to be doing any of this, particularly not without changing their mindset about how they make it safer for people.

So I find it outrageous really that this happens and no bystander is calling the outrage out.

And we have the MEA playing pretend ignorant and advertising the thing. It's all frankly shocking.

I struggle to see if anyone really cares and looks after those who are illest or they just get used by the community given how things, as usual, have ended up going down when it comes to the crux/test of watching people when it is the moment of truth whether they put sorting out making the plan and clinics focused around the illest-first vs being tempted to talk about other stuff that they think might affect them more (but doesn't - because if you don't get that's what the illness is that you can get that ill then they just split the spectrum and think those mild-moderate won't get any iller, whilst getting away with suggesting those who are most severe 'have something else').

SO yes, I'm saying that this still happenning is also down to a failure of certain parts of the community to have held the line and stuck behind those that needed it most when it came to it, that these people think they can carry on regardless. They aren't listening to those feeding back here and think eg the MEA is great because they aren't first checking that those who are most severe in their community actually want this - cos somehow too many assume and think they know best even when they aren't going to as they've neither lived it or heard from those who have nor put sufficient time into finding out properly as they would if it was something affecting them. SO we get the quickie 'did something' cursory stuff as usual.

It's pretty heartbreaking really watching human nature.
 
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Suddenly, after all this time since 7 October 2024!

Please note:

  • This is NOT part of the public consultation process, although it is designed to look the same. That is officially closed.
  • It is therefore research in this context, into a group of patients where there are significant patient safety concerns, which requires informed consent. THere is no mention of it in the 'survey'.

Think implementation task and Finish Group, Final Delivery Plan, the fact no publicly available research into very severe ME/CFS has taken place.

NIHR HERITAGE - this will be producing a National Service Framework which will be signed off by SoS Wes Streeting 9normal procedure), and it will also be producing educational materials. Based on what?






'are welcome'. That would be following the NICE Guideline ng206 which states

1.17 Care for people with severe or very severe ME/CFS​

This section supplements the rest of the guideline with additional considerations for people with severe or very severe ME/CFS.







Who has been invited to the join the Task and Finish Group on this, because up to last week the patient and charity stakeholders previously involved didn't seem to know if they would be invited.

This is very needed - but done properly. For example, is this a stop gap measure while we all wait for the HERITAGE Programme to produce at some unknown point in the future?

Then of course, later the survey results will form part of the NSF? Is that the plan? Based on what has been produced so far by BACME and the Survey is already Live, it could be seriously challenged on the grounds that patient and carer participants (the only ones who really matter here) have been unable to give fully informed consent to it.

But then it saves HERITAGE on conducting any research with PPI. Unless, they already plan to, but I didn't see it transparently set out in the Final Delivery. I could ,have missed it though.
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Agreed. It feels like trying to get away with a side-step on doing this properly and is almost forcing false data by coercing those affected into no-win situations where don't fill it in and they apparently claim it doesn't exist or it relies on only the data of those who are in certain limited situations that are mis-representative, or risk filling it in and knowing it will manipulate what content is taken and how it is interpreted and you've contributed towards them claiming it was reasonable numbers

this sort of data needs to be going through trusted and independent sources not directly to people who patients absolutely should not trust based on past behaviour and those people should absolutely be understanding of that and so seeking to find appropriate partners if they really cared.

NO reason for example it couldn't have got someone who is more trusted like physiosforME , 25% group, decent independent experts, involved as the guardians of the data to make sure it wasn't manipulated and people felt it was safe. and who might tell them they needed to work with others to make sure the survey was actually doable and didn't ask questions that weren't required, and in fact that a survey was the appropriate method at all.

It says it all really that I can't just immediately say the experts in the areas for these specific issues such as feeding, because ideology and misinformation they've had imbued into them about ME/CFS might be what ends up influencing it instead.

If things that come up aren't in line with what they want to do are they going to be made publicly available to those who spent the inordinate effort filling it in - or will they disappear as thanks and real empty appreciation for just what they took from those people when they asked them to fill it in?

And it should be owned and made clear what level of transparency and storage there will be and that things will be done from it before they ask people to provide data which will be at huge risk and exertion they don't have. They either aren't 'getting it' somehow or they do and are choosing not to because they are being allowed to sidestep this.

Which should be information, regarding any other illness that would be captured by eg proper near-miss, miss, and risk data collected via clinics and other means - clinics that don't exist for ME/CFS because we don't have people who are medical at all, instead only allowed to pretend it is behavioural and deliberately not collect this data in a medically-interested form. I'ts like having cardiac departments suddenly transformed into behavioural job coach centres that don't service anyone except the mildest and won't therefore collect info on outcomes or even who has what illness and if it gets worse. Or safety data.

We just aren't taken seriously at all, particularly at this end of the illness. They might not have any services whatsoever yet, but that doesn't mean they can't find the correct people to do a safe and reliable job of proxying collecting representative data on safety issues
 
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