Barriers impacting access to NHS care for people with ME and Long Covid - we want to hear your experiences

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? A recent blog on the hub from #ThereForME explores the barriers that impact access to NHS care for people with ME and Long Covid.

 If you have ME or Long Covid, or care for someone who does, we’re keen to hear about your experiences:

• Have there been times where you delayed or were unable to access the care you needed due to these or other challenges?
• Have you or the person you care for experienced an exacerbation of symptoms due to exertion involved in seeking healthcare?
• What would make the biggest difference to you to make care more accessible?
• Do you have any experiences to share where reasonable adjustments were made or a member of staff went out of their way to make it easier for you to access care?

Please share your experiences. You can post anonymously below or you can sign up to the hub and become a member which will allow you to post on other topics too.  Sign up is free and easy to do. 

Until full training is delivered across the UK all these issues will continue. 
 

Until then the top managers of all MHS healthcare settings will remain the same.

I have experienced all of these issues related to NHS and continue to experience them, often avoiding getting any help via physio, for connective tissue disorders which HCP don’t seem to know about so I end up having to take the physios for me book with me. It’s all become too exhausting after decades of this. I’ve almost given up.

I have so-called "mild" ME - which means that my needs are far lower than those with moderate or severe ME.

However even for me, a trip to a hospital can mean the next day or two are lost to "productive life": a trip to a hospital can mean: public transport too and from the site, long walk between bus stop and the clinic. If there aren't enough chairs, standing for extended periods (which uses a lot of energy) and, because I "don't look ill" people are unlikely to help me get a seat.

As with many other activities, I have learned to minimise energy use: I drive to the site in good time, I walk calmly to the clinic and sit in a quiet area where possible.

For a person with mild ME, it is simply about minimising energy use, but so many public sites are designed with the idea that walking has no impact on the user, and seat people in busy areas (think airports as a classic example of ME unfriendly spaces).

The best solution for me is: car park, short walk, seat in a quiet area, see doctor, go. If I do this, a visit doesn't impact me, but too often hospitals are busy spaces with long walks to the clinic and you end up seated in a stressful environment.

I have had zero health care of any sort since I became housebound in 2018 following cancer treatment which worsened me ME mainly due to no adjustments being made for my ME when I had a lumpectomy. I have had no follow up mammograms since then (should be yearly). I spoke to the national screening service (Scotland) to try to address this as I've had breast cancer twice now,  the conclusion was that if I needed any treatment as I couldn't access the hospital they could do nothing-at no point was any attempt made to help me access the hospital. I cannot access smear tests. My lymphodema and osteoporosis which should be being monitored have not been for years. My GP refuses to do home visits so I effectively have no health care at all. The idea that people with ME should have a care plan is a joke when most of the medical profession are unwilling to make any adjustments to enable this.

I have severe ME/LC. Despite 2 consultants (one private, one NHS) stating I need a specific test from neurology and asking for this test to be done at home, neurology has refused my referral and said (despite me being seriously unwell) they see no grounds for me to be tested for anything. Now, if ME/LC wasn’t on my record, I very much doubt this would’ve been the response. This is one example of many in which having these illnesses causes DRs to treat us differently and we do not get the healthcare we require. I have been rejected and treat poorly by so many departments due to having this illness. 
 

I have had abnormal smears in the past. I have missed my smear by 4 years now. I have no way of getting this as I am bedridden.

My GP surgery has written on my record not to give me any medication and told me to have CBT & open my curtains. Light makes me feel unwell and I can’t even speak to have CBT. 

If I ever have an emergency I would risk die at home as worsening in hospital isn’t an option. I can’t sit up in a wheelchair & I can’t get to the car. Sitting in A&E for hours on end would result in me dying as it would cause a crash that bad I’d never come back from it. 
 

Doctors don’t understand anything about this disease. I have no idea where to begin but we need a serious change in attitudes and care. If you have severe ME like myself, you physically can’t attend hospital for anything and this is something they do not and will not understand. There’s tests I need and I can’t get them as it’ll destroy my health. 
 

We need full mandatory training throughout the NHS. This training needs to include videos of the most severe, people who have died. It needs to include research and evidence that this is a REAL debilitating disease. It has to be training they can’t just skip through to get to the end to add it to their credits. We need specialist nurses. The list goes on. 

The last time I left the house was for a five minute doctors appointment. It took over six months to recover but it did lead to being referred to a long term conditions clinic. I finally got a diagnosis of severe ME after 40 years of illness. After my diagnosis I was discharged as there was no treatment available. I am supposed to attend an eye clinic every year to be monitored for glaucoma. When I explained I wasn't well enough to attend they removed me from their list of people to monitor. I feel I've completely lost access to health and dental care

I think there should be some sort of general health monitoring for people with Me, even if it was just a visit once a year to check whether there has been any deterioration or improvement. There should be some sort of service which could suggest resources available if new problems have cropped up. It is the feeling of being left to deal with a seriously debilitating illness, completely without any guidance which is so appalling.

1 hour ago, Anonymous said:

I have so-called "mild" ME - which means that my needs are far lower than those with moderate or severe ME.

However even for me, a trip to a hospital can mean the next day or two are lost to "productive life": a trip to a hospital can mean: public transport too and from the site, long walk between bus stop and the clinic. If there aren't enough chairs, standing for extended periods (which uses a lot of energy) and, because I "don't look ill" people are unlikely to help me get a seat.

As with many other activities, I have learned to minimise energy use: I drive to the site in good time, I walk calmly to the clinic and sit in a quiet area where possible.

For a person with mild ME, it is simply about minimising energy use, but so many public sites are designed with the idea that walking has no impact on the user, and seat people in busy areas (think airports as a classic example of ME unfriendly spaces).

The best solution for me is: car park, short walk, seat in a quiet area, see doctor, go. If I do this, a visit doesn't impact me, but too often hospitals are busy spaces with long walks to the clinic and you end up seated in a stressful environment.

Yes, I'm in a similar position and agree with everything you've written here.

I have severe ME. Accessing NHS healthcare is extremely challenging. One hospital visit can involve all of the following things, all of which use energy that I simply do not have - causing suffering at the time & increased symptom impact afterwards: car travel; wheelchair from c/p to hospital department; cold weather temperature; lights & noise; long waits sat up in the wheelchair; 'intense' conversations requiring cognition; tests that involve getting on & off beds & holding awkward positions; etc. The uncertainty about the response of HCPs to the ME diagnosis adds yet another layer of difficulty - understanding is rare - ignorance & belittling dismissiveness is common. Two recent examples: 1) I need a 24hr heart rate monitor (simple enough you might think) but I have been unable to get this done. On top of the issues above - I have to attend hospital two days in a row (I never go out two days in a row, as this does not provide time to recover/recharge). Also, having had to cancel twice as I was too ill to attend, I have now been dismissed & referred back to my GP. 2) I need a 9:00am Cortisol test - at 9:00am, I'm unable to open my eyelids, form words; sit up in bed; I have a drink from a tube assisted by my daughter/partner - I can not get to the GPs surgery for the test - so I'm not able to have this done. Its a crazy - & very sad - situation. The more ill you are with ME the less likely you are to be able to get any help from the NHS.

 

 

I developed M.E. after an infection in 1999, that left me barely able to work and often housebound. Over the years the symptoms have worsened, I am now almost entirely housebound, with virtually no social contact, completely unable to work a job, and enduring unbearable suffering that is mostly invisible to others, including doctors who I rarely see. I have had virtually no support from the NHS, as I quickly grew intolerant of being told "you'll recover in time" when it seemed highly unlikely and even "M.E. doesn't exist" by one GP. At one point I was referred to the hospital and offered CBT and graded exercise therapy (GET), based on appalling quality evidence from the shoddy PACE trial and with no recognition at all of the potential harms of pushing people with Post-exertional Malaise (PEM) to exercise. It is dangerous. Luckily I knew enough to reject this "treatment", but the NHS has harmed many, and many of them permanently.

The NHS needs to significantly up its game to keep people living with M.E. safe and avoid making them sicker, including flexibility of engagement, home visits for the severely affected, encouragement to rest and stay within physical limits so as not to cause worsening, and encourage and share best practices of safe symptomatic treatments where they exist, including for orthostatic intolerance, pain and sleep. M.E. is a devastating disease with a horrendous quality of life, and to date, the NHS has mostly only succeeded in adding harm and stigma on top.

On 28/01/2025 at 12:24, Patient Safety Learning said:

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? A recent blog on the hub from #ThereForME explores the barriers that impact access to NHS care for people with ME and Long Covid.

 If you have ME or Long Covid, or care for someone who does, we’re keen to hear about your experiences:

• Have there been times where you delayed or were unable to access the care you needed due to these or other challenges?
• Have you or the person you care for experienced an exacerbation of symptoms due to exertion involved in seeking healthcare?
• What would make the biggest difference to you to make care more accessible?
• Do you have any experiences to share where reasonable adjustments were made or a member of staff went out of their way to make it easier for you to access care?
•  To share your experience, either comment below or share in our community thread here.

Please share your experiences below.

I’m a carer for a young person with ME.
In order for healthcare to be safe we require basic procedures such as staff wearing masks and appropriate ventilation. Any bug or virus could cause relapses or worse for people with ME. We find accessing healthcare over winter high risk and tend to postpone any investigations or procedures to the warmer months when there are less bugs about generally.
Accessing healthcare is also difficult for ME because appointments tend to be within the 9-5 system whereas ME doesn’t work like this, especially due to sleep reversal. Attending a morning appointment is just impossible.  It’s also extremely difficult to plan an appointment with ME as we just don’t know how that person will be on the day, however there’s little understanding about this. Similarly our hospital is a 3 hour round trip, so the energy required to attend is huge with days or weeks of payback. For all these reasons we only attend essential healthcare appointments. I am a carer for someone with ME and my life is similarly restricted as I don’t want to bring home bugs and viruses that could cause relapse. Therefore my own healthcare interactions are minimal. 
We are very lucky to have a GP who is understanding. Because we are cautious about waiting in a busy GP reception area which is full of unwell people, we wait in the car outside and she calls us when she is ready. On our request she wears a mask and opens the windows for some ventilation. She also keeps the session as short as possible and arranges an appointment later in the day.  We are very lucky to have this understanding as it’s rare. But these simple procedures could be incorporated by any health centre or hospital. 
However we don’t get this same understanding in other healthcare situations including our local hospital.
The complete lack of training/education and general misunderstanding of ME also restricts our ability to attend healthcare. We just aren’t offered the opportunities for a start. Secondly if we are offered an appointment we need to consider whether it is worthwhile, will it be helpful or will it be harmful? We have to assess if the use of very limited energy is worth it. Interactions with an NHS system that is uneducated in ME can be extremely stressful, upsetting, creating a deterioration in health and even be harmful.In order to feel safe and embrace the healthcare system we need mandatory education and training, that is accurate and appropriate. Ensuring the training us accurate and appropriate is another concern…

Just reading through the comments I can't believe that other people are suffering as I do, that's the problem, we all think it's just us as there is no treatment for ME/ LC. I had ME over 30 years ago, different circumstances , was working and married. Eventually my weak husband left, which caused severe depression although his taunts of it's all me, me me theres nothing wrong with you ended. A lifetime of joint life together was difficult to restart but, I did it and tried very hard to survive, mentally and physically. I was managing ok until I caught covid and then my ME returned big time. For 16 months I've battled to get help which on top of all the symptoms just completely exhausted me. Eventually just one sympathetic GP did lots of tests, obviously all irrelevant, but still put me on hospital lists. Gradually the referrals have all disappeared without any appointments being given. Alsorts of excuses and absolutely no help, I live alone but would have got friends or even saved for taxi to get me to any offered appointment. So I've just been left, as a military vet I was given CBT as a priority, but have had no help whatsoever from NHS. Really not sure where I will go from here. I'm starting to completely give up. You can only struggle for a certain length of time before  total collapse. 

I have had very heavy menstrual bleeding and just needed a prescription to help ease the flow. I was triaged for a phone appointment in three days, having made it clear I had been bleeding a scary amount for two days and heavily for weeks before that. The person triaging did not notice or take into consideration that I am housebound with Severe ME and did not adjust my waiting time when I pointed it out. I could have ended up in A&E completely unnecessarily and I couldn’t risk the impact on my ME, given I was already weaker than usual. I self medicated with hormones I had, to get myself through the 3 days, but should not have had to/may not have had the option or knowledge to do this. 
I was told I should have rung 111 and if I couldn’t go to hospital they would have referred me back to the GP/pharmacist and flagged up that I was needing more. This should have been clear from the start and avoided stress and multiple phone calls and assertiveness it’s hard to muster, especially when more unwell and if no one is here to help me. The system is extremely hard to navigate from the econsult to the surprise phone call follow ups where I can’t think on my feet or state my needs. So I either avoid contact until desperate because it’s so hard, or have to bother the GP with things that might actually be ok, in order to avoid crises that come from how slow the systems are. My prescription has taken 6 days to be delivered so far since the phone appointment, 9 days since the initial contact (I don’t yet have it). 
GP came to my house a week from initial contact, after interim phone call, and examined me which was great, except it was during my worst time of day and I was waiting for hours trying to remember what I needed to say and do. I asked her not so speak so loudly but she continued after a short lowering of voice. This meant I could not take in the information properly or communicate myself, and left me feeling even worse. I’m sure I have not remembered some of what she said. 
Not only do we need home visits, we need people to speak gently and slowly and to be given a time of day best for us, eg a 2 hour window. We cannot stay mentally “on” for so long, and I also need to manage POTS medications around activity level and cannot plan that when I don’t know when I’ll need to move think and speak. 
I am severely affected and have suffered a lot for this interaction since. Very severely affected patients would have been completely devastated by this interaction and I worry for my future. 
The GP also wore a facemask which I provided, which I appreciated, but they should be given good FFP2+ masks for all visits to people’s homes. This would protect them from our very breathed air, in case we are infectious, and protect the most vulnerable patients from them. 
I also have bloods taken by district nurses and am never told even what day they will come, never mind morning/afternoon estimate. This means for a week or so when I know they may come I have to change my bath and self care habits, leave my ear plugs out which disrupts my very essential naps and means if alone I have to jump up with no notice, when my medication may not be optimal to do so. All of this takes a massive toll. 
I may need an iron infusion which will be at hospital. We also need a system that will deliver treatments at home for those that need it, and at least in our most local hospital or GP surgery when that is impossible or we can tolerate a short trip out. Travel is extremely hard. Healthcare settings are so dangerous for us while airborne infections are not mitigated against. 

Moderate/Severe. Fully agree with whats been said so far. I cannot do morning appointments as I need the option to lie in if I have a bad nights sleep. I also hate going to the GP, no body wears masks and there are always at least 2 or 3 people visibly coughing which makes me very anxious as any cold or flu will cause me to crash for weeks.

One point I haven't seen so far, I found blood draws were enough to cause crashes. I know for a fact the amount of blood they are drawing isn't neccessary. During that diagnosis period I would like to see more care taken, perhaps a home visit by a phlebotomist to draw the absolute minimum amount of blood required.

After my diganosis I haven't been back for anything ME related because I know it's totally pointless. But when I do need to go for other things, just more flexibilty on emergency appointments and an understanding that every visit is a risk so mitigations concerning that.

Just to add, we also need masking & ventilation in healthcare. One infection can bring a person with ME baseline down forever. It is of the upmost importance to not catch what made us ill in the first place. 

I'm a person of colour who has had #LongCovid for nearly five years.

I am dismayed at the total absence of Long Covid care or support for people of colour.

The entirety of the chronic illness community narrative is White.

We have to put up with racism in every sphere of our lives, including the Long Covid community. We have a greater struggle to be believed by health professionals.

None of the Long Covid charities or groups or the Long Covid Clinics offers anything distinctive for either people of colour or neurodivergent people.

That needs to change.

I agree with so much that has been said so far. I'm writing this because just this morning, after making an appointment for a blood test, I have come home again without accessing the tests/treatment I was scheduled for, and have had to take to my bed to recover from the stress  and fear of trying to attend, and lack of support enoountered in the NHS system. 

I would like to say something positive first - I have had excellent care from the NHS via my GP services in the past. I had a specialist-trained ME doctor when I first developed ME, who, although she could not provide me with any of the additional services that ME patients so clearly need, was able competently to diagnose me, to reassure me in relation to differential diagnoses, to refer me to the local ME service (which visited me at home and did much to teach me about pacing and help stabilise me in the early months of illness), and who was unfailing in her patience and care for those with chronic conditions like ME, often exceeding appointment time limits and going out of her way to phone with reminders for blood tests or check ups or to follow something up, suggest non-NHS alternative practitioners or simply discuss my fears and concerns, particularly when new symptoms arose. She also arranged for district nurses to come to take blood and other tests rather than me come into the surgery, and generally ensured I had access to the right information, support, benefits etc. And she believed me and listened to me and I felt supported and understood despite the limits to NHS care that we were both aware of and could talk about. All absolutely vital when I was clueless, severely ill, and could not possibly have navigated the various systems myself. 

However, since she retired, my care has been hugely downgraded. I have been passed from GP to GP, most having no clue about ME, or at best being sympathetic, but not knowledgeable. I have been removed from the District Nurse rosta and forced to attend the surgery for tests - meaning that often these are missed or severely delayed due to inaccessibility. No one seems to have any oversight of my care or to follow up, or to understand the importance of routine testing to ensure other conditions are not missed. And the NHS as a whole has taken a nosedive in terms of availability, services, access and in every other way - going to a hospital is now a terrifying and dangerous experience post-covid, with no infection controls in place, for example, along with lack of NHS dental care which means I have had no dental treatment for over 10 years (and again here, understanding of ME is zero, and the prospect therefore terrifying). I have been denied follow up treatment for issues like allergies - and the clinic is 2 hours away by train so impossible for me to access anyway. I no longer have consultant care for my underlying thyroid condition... and so on. 

Priorities for me would include:

1 All tests and outpatient appointments available at local hospital in my own town rather than in main hospitals in Truro (1 hour) or Plymouth (more than 2 hours) as the former is inaccessible to me without assistance (someone to drive me and accompany me and only in certain conditions) and the second completely inaccessible in all circumstances. More services should be able to be delivered at home, including dentistry, blood tests, physio, eye tests, and consultations. There should be awareness of ability to access departments within surgeries and hospitals - for eg I cannot use lifts, and often there is little warning or understanding of energy needs for accessing parts of hospitals. It seems crazy that my local rheumatological consultant department is now on a hill, with no disabled parking, and on the 1st floor (or it may even be 2nd floor) - but anyway it's in a town I can't realistically access so this seems beside the point. But who designed that? Hospitals do not cater in any way for disability - disabled toilets, wheelchair access, poor lighting, no ventilation, other forms of accessibility, are barely given any thought at all in design and planning. Almost everything about a hospital is an assault for someone with ME. 

2. All NHS staff should be wearing masks and taking covid precautions still, including testing and a blanket ban on attending work when symptomatic, as well as segregated areas for patients with covid symptoms. Those of us vulnerable to infections (not just ME patients, many many more) have had our healthcare access massively compromised and turned into a russian roulette of fear and stress with the lack of infection care practiced in most NHS centres. For example, my mammogram mobile unit nurses refused to wear masks saying it was no longer required when I attended (in the local supermarket car park - I could not have gone to the hospital) for a cancer screening. 

3. A specialist department for ME, but also some kind of joined up thinking between other departments for treating all the other conditions that come alongside ME. For example, my endocrinologist should be speaking to my neurologist and my rheumatologist, and my gastroenterologist, and the allergy climic etc as all of them separately decide I no longer need their care, but all this means is that I fall into the gap between them and get no suitable treatment or care at all. Presumably this is the case for all ME patients and a system for cross referral and collaborative care needs to be evolved. ME/CFS has many precursor underlying conditions. Proper treatment for these eg thyroid disease, Covid and other viral illnesses, pain, autism (often a precursor), could significantly improve health outcomes for people with ME. But treatment is poor in all these departments, and few of them understand anything about ME. A&E departments are especially poorly equipped to deal with ME patients - not understanding how other things interact with ME, or that many of us are highly sensitive to medications, anaesthetics and other forms of intervention (tracer dyes, MRI/CT scans for me are a problem) As a result, most of us are terrified of ever needing to go to hospital for anything. Lack of specialist training is a major issue at every single level, from nursing and physio to GPs, consultants, anaesthetists, dentists, etc.

4. Ideally, we should be able to access a portable budget for care that we can spend where we think is appropriate, either within or without the NHS - this would enable us to access specialist services not available on NHS - specialist physio/osteopathy and similar, nutritionists (essential for ME); private endocrinology and other specialist tests no longer available on NHS; psychological services eg trauma counselling; massage therapies, craniosacral therapy, feldenkrais and other therapies that people have found useful in helping to manage their ME/CFS. I am convinced most people could make at least a significant, if not total recovery, with proper integrated holistic care, but this is just not available in the UK. This should also include in-patient rehab centres for severe patients, which specialise in ME/CFS and can offer all the best available evidence based supports and nutritional care in a supportive caring environment designed for those with heightened sensitivities. 

5. Home care and social services support. I am fortunate in that I have both PIP and qualified for social services care and have a personal care budget through which I employ carers to do my shopping, cleaning, personal care and support, and help me in many ways - even so, it is often not sufficient or falls short of covering the kinds of support I really need - and the recruitment is energy-sapping and hard and few people understand ME well. But without this, I would have gone under, long ago. Also critical (in light of current government policy revisions) is the need for understanding of financial support. It is expensive managing all the often invisible symptoms and difficulties that come along with an energy-limiting chronic illness and these disability needs are often hidden and hard to quantify, and different for every person. We all need access to PIP and a choice as to how to spend it in ways that suit our specific needs, not a 'catalogue' that will inevitably fail to cover anything that makes life better for those with ME/CFS. And all people with chronic illness need the additional funds to eat and heat their homes properly to have any chance of maintaining what is left of their health. 

6. An advocacy service. I would love to be involved in designing something like this for patients within the health and social care system - a person with ME, or with extensive experience of ME, who can accompany and act as spokesperson to negotiate and navigate existing systems with the patient who is unable to advocate on their own behalf and often not believed or misunderstood. We need a network of such people who will turn up and be back-up for patients in all kinds of circumstances in life, not only in healthcare and social care settings. 

 

Being a healthcare professional who was then diagnosed with ME I have experienced good and bad health experiences.

The best experiences have been in private healthcare settings. A private physiotherapist who understood ME was a fantastic find. She has given me rehab after hip and knee surgery that was both well paced but also within my limitations. She used hydrotherapy as well as traditional physio and I made fantastic progress hitting all the required targets and more. I was also very fortunate to have two orthopaedic surgeons who understood ME . The private hospital staff were less understanding and required more education, but certainly being away from the manic NHS wards made it a lot easier for me. A second physiotherapist who went on to work in specialist ME physiotherapy was a total game changer. She worked part time for an NHS Fatigue service and one day a week in private healthcare. Seeing her privately cost me a lot of money, BUT IT WAS WORTH EVERY PENNY because she explained so much about why my body was doing what it was, and this then supported my self taught adaptive pacing regime. Over 2 years I was able to find an equilibrium with pacing myself everyday.

My NHS experiences of healthcare have not been so positive. I have been greeted with comments about my weight and immobility , including one GP who even told me which streets to walk down in order to achieve a one mile exercise circuit to do daily for weight loss. With further information on how this would be increased weekly to achieve 3 miles. 
I was unfortunate to have to visit A&E 10 days post knee replacement with a possible DVT. There were no allowances made at all for my ME and even at times my recent knee replacement. Bright lights, walking long distances on crutches, 10 hour wait on first visit and 6 hour waits on 2 subsequent visits to SDEC (same day emergency care) , being forced to ask for a seat to sit on, nothing to put my leg up on, nobody to get me a drink when the trolley came (husband had gone home to feed the dogs etc) until another patient relative saw my predicament. No acknowledgment of fatigue or PEM which was quick to arrive given that I was only just a week out of hospital. I didn’t feel safe and I didn’t feel cared for, which for someone who was well used to hospital was alarming. My husband was incandescent on more than one occasion.

when I was newly diagnosed with ME in 2013 I was referred to the local ME/CFS service. I was immediately rejected on the grounds of being depressed and having a BMI of over 40 ( the NHS Trust set the cut off for surgery at a BMI of 40). I appealed on the grounds that I wasn’t having surgery and that surely every patient referred deserved an initial assessment. This appointment was granted, but the decision stood. The staff were knowledgeable and sympathetic but at the same time, stern and inflexible. 4 years later I got a reassessment appointment and was told to have weight loss surgery, and put on graded exercise therapy, 4 weeks in I was too poorly to attend my appointment, but after missing 4 appointments I was struck off the clinic list. And have not been invited back in 6 years. The clinic has been incorporated into another service and is now not functioning. So as with many NHS Trusts there is no dedicated service in my area, with staff and treatment/symptom management that is dedicated to patients with ME/CFS. 
I have a new GP who does sort of get it. I know of 5 people with ME at my GP practice and so there is some understanding.

However last year following an e-consult, my preferred contact method initially with the GP practice, I was informed by my GP that he had made an appointment to see me. I turned up at the allotted date and time, only to discover that the appointment didn’t exist. (Technical glitch or operator error?). I did make a fuss and was told that I would not be seen but would be phoned at sometime that afternoon. I explained that I would be unavailable for 2 hours due to my afternoon nap (no different to being in a meeting?) but no allowance could be made. As I arrived home the phone rang, GP reception saying that I could come back and the original appointment would be honoured with another GP. All the backwards and forwards, parking, walking, getting stressed by the situation resulted in a huge flare, despite me taking measures to adapt my pacing regime. This is the bit the GP and practice personnel don’t see, but the patient and their family and maybe wider circle have to deal with the consequences of. I was out of action for some time.   There are many more situations but these are the ones that stick in my mind. NHS care is far more inaccessible than private health care in my experience. As a former nurse lecturer I would love for ME/CFS to be part of the nursing curriculum alongside pain management and dealing with long term conditions.

It's really salutory and moving to read so many posts sharing similar experiences. It is surely clear what the NHS needs to do - or be given the money to do. Also, to coordinate with local councils in terms of social services support - my local council at one point had a Blue Badge form that specifically said by one section on mobility that having ME did not count as a qualifying condition!! Fortunately that has now been removed. Wider access issues are also a concern - for example, there are almost no disabled car park spaces that enable me to access the local beaches - the ones that aren't on cliffs or with steep ramps that I can't negotiate -  even though sea swimming even for a minute or two is really beneficial for my ME/CFS. The local town has closed its shopping street to traffic from 11-4, which means even blue badge users can't park outside shops....and who with ME will be going before 11am? Or even sending a carer. I could go on.

I wanted to second what one contributor above said about black/BAME and neurodivergent people with ME. ME has so many implications across so many interconnected factors and people of colour are known to be less well treated already in the health system including for pain and fatigue, and also to be at high risk in population terms for ME and long covid. Plus, autism is a risk factor for ME and the two are commonly connected (as with ADHD and hypermobility disorders). NHS staff need training in this kind of awareness, too - equality and diversity, and co-presenting risk factors and needs. 

I often dont bother contacting the GP anymore. The effort required to make an appointment, attend the appointment, explain what's going on, driving to appointments, sitting in waiting rooms to then be told that it's just your M.E we can't do anything isn't worth it. I've asked to sit in the car while waiting for appointments but its not noted so I have to explain every time I attend which takes up energy I dont have. The GP I saw most often also had a room the furthest away from the waiting room which didn't help. 
Also as soon as they hear M.E they stop listening. I've asked for support with symptoms related to my M.E which could make things easier they refuse as it's part of my M.E. 

I tried private health care however this involved a night time appointment and  a 4 hour round trip and when I finally saw the consultant he said M.E didn't exist, he didn't believe it, there was nothing wrong with me,  I just didnt want to go to work. By the time i saw him I could hardly walk and was struggling to get out the house but he refused to accept there was anything wrong. Told me to do cardio activity 3 times a week and come back if I REALLY was ill. 

I did have understanding from a NHS OT and physio. The OT had an interest in fatigue and M.E and was very understanding about how much I could do and how to support me. The physio had some understanding of M.E and would work at my pace and make adaptions to exercises so they worked for me. Unfortunately, I was discharged from both because I wasnt making enough progress to met their targets. 

Moderate Long Covid meeting ME/CFS criteria here. Similar to other comments, the two things that would make the biggest difference for me to be able to access healthcare would be:

1. Infection control measures in place reliably and effectively without having to fight for it every. single. time. It seems that healthcare professionals often do not have the most basic understanding of the risks this poses, that covid is airborne, and the stress of trying to advocate for yourself. I have been belittled and treated as though I am “anxious”, repeatedly told that Covid precautions are no longer mandatory so staff don’t need to take them. The relief it would bring would be immense if I felt that healthcare buildings were safe - ventilation and high quality masks worn as standard. 

2. All healthcare staff having sufficient training on Long Covid/ME/CFS and in particular an understanding of PEM. Any adaptations have to be fought for and there is no understanding of the consequences of exertion with this condition - there is often an implication that you are anxious or difficult, and the misunderstanding that it is just about being tired after an appointment. 

An example where flexibility worked - my child with ME/CFS needed a sit-stand POTS test and was asked to attend an appointment with her paediatrician at a busy hospital a 30min drive away. After advocating, we were able to have this done instead by her physio who did a 15 min home visit and happily wore an FFP3 mask. Health services need to think outside the box about how things can be delivered differently. It’s usually possible but not without a fight which uses energy we don’t have! Surely patients with these conditions could automatically have access to things like home blood tests and remote appointments, the ability to submit written information in advance to minimise talking time and shorten appointments etc. As it is every appointment is a new challenge to get adjustments in place. 

I absolutely have delayed or avoided healthcare as a result of the challenges and EVERY time I seek healthcare I suffer PEM as a consequence.

Just basic consideration and care would go a long way.

Recently had to have a breast scan, hospital had next to no parking (royal free) so I had to arrange a taxi both ways and cancel all plans for that week and the following to be well enough to go and still suffered afterwards. Initial consultation is fine and then I'm called for my ultra sound and told they are fully booked and I need to go home and come back another day. I was nearly in tears with frustration! A healthy person without an energy limiting condition can't comprehend just how much of a kick in the teeth this is to have us make all the arrangements and plans and accommodations to attend an appointment and then have it cancelled when you are right there. I would have been happier to wait another 45 mins with my eyes closed trying to "rest" in the waiting room than have to come back 3 days later but this fact fell on deaf ears. It's well documented in my medical history that I have ME so if something like this could be flagged so patients time and energy is not abused, because for people with ME, it is literal medical abuse, we might have some faith in the NHS again.

No GP has ever really cared about ME or treated it. Friends and family are surprised that I have no regular support or treatment and I am left to research and try experimental drugs on the Internet because there is no support. It is a scandal and disgrace.

My husband had to care for me and work part time, until 2019 when he had emergency surgery, Sains bury drivers helped me out. I am bedridden they undid water for me andgave me sandwiches. The gp did not provide care and last year cancelled a blindness appt for me because i could not get there. I have decided not to go to the doctors anymore- j have had over 25 years of this- it is enough.my husband is ok and provides food for me in bed.

Thank you for asking these important questions. 

I've lived with M.E for 38 years, the illness hs progressed from moderate to severe/very severe over that time. Throughout the years that I've had M.E my trust in Doctors & HCPs has been eroded to such an extent that I completely avoid all but those who are widely known & recognised M.E experts.  The stigma surrounding M.E leads to an immediate perception that any patient presenting with this condition is not suffering from a serious biomedical condition & cannot be trusted, the repeated impact which that has is so devastating that a patient with M.E's trust is completely eroded.    A large part of the responsibility for this lays with the BPS proponents, Wessely, Sharpe, White, Garner, Chalder etc, who have done so much harm to pwME over many years.  The very public lack of support which the Royal Colleges have shown for the 2021 NICE guidelines continues to have an extremely negative impact on how M.E patients are perceived & treated within the NHS.     Healthcare settings are not designed to protect pwME from an increase in symptoms, reasonable adjustments are not made to accommodate us, PEM - PESE are misunderstood at best.   Healthcare for M.E patients needs an immediate & complete overhaul, M.E expert Drs must be allowed to lead on this, Dr William Weir, Dr Binita Kane, Dr Nigel Speight, Dr Claire Taylor would be the best placed. 

A good start would be NHS doctors and nurses actually believing that long covid and ME are real illnesses, i spent days in the hospital recently for a separate issue and not one doctor took me seriously when i told them my diagnoses as part of my medical history. They don’t care. I will say the lack of self propelling wheelchairs for A&E patients was a problem for me, i was there alone and was stuck, unable to reach the vending machines or go to the toilets for hours. 

I have severe Long Covid, housebound mainly bedbound.  I have B12 deficiency (pernicious aneamia) I need B12 injections every 8 weeks.  I was told these are essential and will need them for life. I have asked my GP surgery on several occasions if these can be given by the district nurse. The Drs surgery won't even consider this. Going to the surgery  every 2 months causes severe PEM for 2 weeks after each injection.  I feel I need to fight this, but my carers (family) and I really haven't the energy! This is just one thing,  not to mention routine screenings like smear tests, breast exams etc....I haven't  had these since getting covid 5 years ago. 

I actually fear interactions with medical professionals as I'm not taken seriously. 

Thank you for asking for patient experience.