#ThereForME campaign / Building an NHS that’s there for Long Covid and ME

The problem is that if most patients are not well-enough informed to know what they really want or need you end up with the same old mish-mash.

How do you 'prevent' people with ME/CFS getting worse?

By stopping the use of GET and curative CBT which is widely reported to lead to deterioration. Obviously this won't protect everybody but I and many others would likely still be mild If not for psychosomatic/bps interventions.

And by teaching people and their carers how to manage their condition and rest more, so they don't do what is natural for human beings and push and push until they cant function anymore.

Obviously this does not account for other factors which might cause worsening, and I'm aware it's not entirely clear why we get worse sometimes. But it would go a long way.
 
By stopping the use of GET and curative CBT which is widely reported to lead to deterioration. Obviously this won't protect everybody but I and many others would likely still be mild If not for psychosomatic/bps interventions.

And by teaching people and their carers how to manage their condition and rest more, so they don't do what is natural for human beings and push and push until they cant function anymore.

Obviously this does not account for other factors which might cause worsening, and I'm aware it's not entirely clear why we get worse sometimes. But it would go a long way.
I think PIP and benefits is a really good demonstration of why people don’t slow down.
Are you well enough to work? Yes, but I shouldn’t as it’s probably going to make me permanently disabled in a few years.
Are you well enough to wash, dress, cook, walk etc yes but it tired me out and cumulatively that will probably lead to making me permanently disabled.

Yeah, you’re not entitled to anything. Good luck finding a sucker to finance your life whilst you sit about meditating and “trying not to get really ill”.
 
Exploring the barriers that impact access to NHS care for people with ME and Long Covid
Summary

For healthcare to be safe it needs to be accessible. But what does this look like for people with ME (myalgic encephalomyelitis) and Long Covid? This blog from #ThereForME explores the barriers that impact access to NHS care for people with ME and Long Covid, and encourages the patient community to share their experiences.

Content
What is ME and why is accessing care difficult?

ME (myalgic encephalomyelitis, sometimes referred to as ME/CFS) is a complex, chronic condition affecting multiple body systems.[1] Symptoms include debilitating cognitive dysfunction and post exertional malaise (PEM)—the exacerbation of symptoms following exertion, which can sometimes lead to a long-term deterioration—the cardinal symptom of ME.

Patients with ME have one of the worst qualities of life of any disease: lower than various forms of cancer, multiple sclerosis or chronic renal failure.[2] The most severely affected patients are reliant on full-time care, sometimes becoming unable to speak or swallow, and may require hospital care to avoid dehydration and malnutrition.

Since 2020 at least two million people in the UK have been affected by Long Covid. Approximately half of those affected meet the criteria for ME (though not all have been formally diagnosed), alongside those who have developed other long-term health issues following Covid infections.[3]

For people with ME and Long Covid, accessing healthcare, whether for these or other conditions, can be challenging. PEM means that it can be difficult to receive care without risking a deterioration in symptoms, especially when reasonable adjustments are not made to minimise the exertion involved. A lack of knowledge, misunderstanding and stigma around the conditions exacerbate the issue, sometimes making patients reluctant to seek care and clinicians unlikely to understand the adjustments that are needed.

Together, these and other barriers mean that people with ME and Long Covid may avoid, delay or be completely unable to seek the care they need, creating risks for patient safety.

Difficulties accessing care at home
A 2023 public consultation highlighted failures in the health service that included the accessibility of NHS care for people with ME—particularly for housebound or bedbound patients.[4] This was echoed by a 2024 #ThereForME survey of over 300 people with ME and Long Covid (and their carers).[5] Two-thirds of people responding to our survey said that the NHS had not been there for them when they needed it. The overall accessibility of care was highlighted as a core concern.

Housebound patients answering our survey reported struggling to get access to home visits for monitoring and routine screenings or even remote/phone appointments. Patients reported delaying or avoiding seeking care as a result, or in some cases turning to private care as the only option to facilitate routine investigations. Learnings from care for other conditions can show how similar barriers have been addressed—for example, progress in care for people with learning disabilities.[6]

Hospital systems and environments
People with ME and Long Covid often experience difficulties navigating energy-intensive NHS systems and hospital environments. For many, the process of arranging and receiving medical care may go well beyond their limited energy envelope. This includes challenges like inflexible booking systems, appointments that are changed or cancelled at short notice, long journeys to medical appointments or needing to coordinate with multiple referrals and clinicians.

Patients may delay seeking care, even in emergencies, due to the toll that a busy hospital environment is likely to take on their chronic symptoms. Particularly in A&E and inpatient care, busy waiting rooms and hospital wards may exacerbate sensitivity to noise, light and movement. Patients may be unable to sit upright in waiting rooms for long periods of time without their symptoms being exacerbated.

While reasonable adjustments are key to accessibility,[7] and the 2021 NICE Guideline for ME/CFS outlines some adjustments that may be needed,[1] knowledge of the Guideline is limited in the NHS and the majority of NHS Trusts and Integrated Care Boards are not implementing it.[8] More widely, limited knowledge about ME, and similarly Long Covid,[9] means that patients don’t receive treatment that is sensitive to their symptoms—and, crucially, that avoids exacerbating them—because clinicians lack basic knowledge.

People with ME and Long Covid, who are often particularly vulnerable to infections, may also avoid seeking healthcare due to concerns about acquiring infections. Many people with Long Covid report deterioration after Covid reinfections,[10] as the pandemic continues far from the headlines and with few measures in place to prevent airborne transmission. This may also impact the ability of family carers to access healthcare themselves, fearing acquiring an infection which could set back their loved one’s health.

Trauma in healthcare
Traumatic experiences in healthcare also play a role. Many patients with ME and Long Covid have experienced feeling dismissed or disbelieved, sometimes discouraging them from seeking care in future. The 2024 #ThereForME survey documented multiple cases of patients who said that, due to such experiences, they would be reluctant to seek NHS care even if experiencing life-threatening symptoms, expressing a sentiment that they would ‘rather die at home’ than seek healthcare in an emergency.[5]

ME is significantly more common among women,[11] meaning that experiences of stigma linked to the condition overlap with gendered experiences of healthcare,[12] including how pain among women is routinely dismissed.

https://www.pslhub.org/learn/improv...are-for-people-with-me-and-long-covid-r12677/
 
I think PIP and benefits is a really good demonstration of why people don’t slow down.
Are you well enough to work? Yes, but I shouldn’t as it’s probably going to make me permanently disabled in a few years.
Are you well enough to wash, dress, cook, walk etc yes but it tired me out and cumulatively that will probably lead to making me permanently disabled.

Yeah, you’re not entitled to anything. Good luck finding a sucker to finance your life whilst you sit about meditating and “trying not to get really ill”.

Took me 8 months and all the stages to get basic PIP. I would probably have given up at the first stage had I scored any points. I was so shocked to score all zeros that I went for the mandatory reconsideration. Scored all zeros on that too so went for the appeal.

It was an absurd process where they don't listen to what you're saying and look for key words instead.
 
Took me 8 months and all the stages to get basic PIP. I would probably have given up at the first stage had I scored any points. I was so shocked to score all zeros that I went for the mandatory reconsideration. Scored all zeros on that too so went for the appeal.

It was an absurd process where they don't listen to what you're saying and look for key words instead.
It’s a horrible process, yes. I had to go to appeal to get basic level. But in order to actually “pace” I need higher level. I’m not sure that “well yes I can do x, y, z but I shouldn’t” will wash.
 
By stopping the use of GET and curative CBT which is widely reported to lead to deterioration. Obviously this won't protect everybody but I and many others would likely still be mild If not for psychosomatic/bps interventions.

Yes, but that is not what it says under prevention. It talks of things like personal care plans and 'learning from existing practices'. And this is going to be in a multidisciplinary framework in 'the community'.

Sounds like same old, same old...

We need specifics.
 

Again, this seems to completely miss the point that there is no care to be worth accessing at present. The problem is NOT access, it is that the care is worse than useless. There is also a thing about how difficult hospitals are. But they needn't be if there is an easy access bungalow style ME/CFS clinic with plenty of wheelchair space etc.

It seems a lot of words missing the point.
 
Yes, but that is not what it says under prevention. It talks of things like personal care plans and 'learning from existing practices'. And this is going to be in a multidisciplinary framework in 'the community'.

Sounds like same old, same old...

We need specifics.
There is no care. You can’t access something which doesn’t exist.

Social services assessed I can have one visit per day for 15 minutes, the carer will microwave food and pass it to me. Any other domestic assistance I need to pay for myself.
Adult services assessed my home as adequate, no aids adjustments they can think of.
Community physio told me if I can’t sit up rigid straight with feet on the floor, then I should stay in bed until I can, all day if necessary, every day. If I want to put my feet up I should take to my bed.
Dietician told me to eat anything I can, no matter how much weight I gain, in case I lose the ability to eat the weight will keep me alive.
ME clinic want me to attend 12-18 month group sessions online to write my care plan, must stop private counselling during this time, I’m not willing to do that. GP will not write care plan.

So Ive “accessed” care and “accessed” a care plan. As a result, I’m receiving neither.
 
Again, this seems to completely miss the point that there is no care to be worth accessing at present. The problem is NOT access, it is that the care is worse than useless. There is also a thing about how difficult hospitals are. But they needn't be if there is an easy access bungalow style ME/CFS clinic with plenty of wheelchair space etc.

It seems a lot of words missing the point.
Quite.
 
It appears #ThereForME are in the "Task and Finish" group for the DHSC effort. (They also posted a list of other organisations that were invited to that DHSC group).
It’s a shame S4ME isn’t on the list, although I am assume there will be quite a few active members of the forum who are involved as members of other groups.

Do we know if it’s too late for other groups to be included?

@Jonathan Edwards Are you involved with the Task and Finish group?
 
Again, this seems to completely miss the point that there is no care to be worth accessing at present. The problem is NOT access, it is that the care is worse than useless.

Have there been attempts at patient-designed care? @Suffolkres has been trying to get suitable services for Suffolk and NE Essex but I think that has been more about the structure of care (e.g. getting a physician-led service, that kind of thing)? (Sorry if I've got this wrong, @Suffolkes - I'm struggling to read long things at the moment.)

[Edit: Also, I haven't read this thread and have just realised it might be all about the question I've just asked, in which case, apologies!)
 
But that is all there is to suggest isn't it? A functioning long term support system based on hospital clinics plus domiciliary care.
That's a good question. But at the moment, we don't have physican-led clinics, and PwME are being offered all sorts of dangerous rubbish. So I wonder if it would be worth patients trying to specify at this point what care they'd want provided (for example, for sleep, pain, OI, etc.) on the basis of good evidence, and maybe asking for non-evidenced treatment only to be given as part of a clinical trial. For example, we've discussed the use of electrolytes for OI recently, and it doesn't seem to have any strong trial evidence or ongoing trials. It might be useful to point out what shouldn't be offered as much as what should be offered - including approaches based on gradually increasing activity.

This might be another thing that could be crowdsourced from the forum, potentially.
 
So I wonder if it would be worth patients trying to specify at this point what care they'd want provided (for example, for sleep, pain, OI, etc.)

I think we know that. They want anything for any of these that has some evidence of working.
NICE gives a reasonable guide.

The problem is that the vast majority of patients are unaware of the problems of ensuring that treatments actually work. If advocacy groups keep saying we should have services everywhere and patients should be consultant you can bet your shirt you will end up with physios getting them to do just a bit more activity and OTs saying they better not have a wheelchair just yet and why not let's have some psychologists to blow away those unhelpful thoughts and we are back to square one.

The government is all for lots of free physio - they keep saying so, and apparently have no interest in whether it does good or bad in reality.

Rather than these vague rallyings for more services in the community to prevent worsening what we need is focus on what is actually going to be of use. The pubic have no idea of what. Probably the most useful thing is to have some committed physicians who can learn enough about the condition to be able to develop useful treatment in the future.
 
NICE gives a reasonable guide.

I just had a look and was surprised to see that it did, but it includes, 'Do not offer people with ME/CFS ... physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS'.

That doesn't seem to be happening in at least some places, with the whole 'pacing up' thing, which makes me wonder what else in the NICE guidelines isn't being observed.

I wish we knew what was actually going on. Is there no tracking within the NHS of whether units in any speciality (cancer, diabetes, etc.) are following the relevant NICE guidelines or not? Or is it all just, 'They're only guidelines, not rules'?
 
Probably the most useful thing is to have some committed physicians who can learn enough about the condition to be able to develop useful treatment in the future.

Any thoughts about how we can get some? We seem to be deeply unpopular as a set of patients.

Or is it the case that if we ever get physician-led clinics being set up, that's when we'll get the physicians?
 
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