It’s ME Awareness Week 2021 (#MEAW21) and we’re talking about health and social care for people with ME/CFS (#NHS4MECFS).
With the August publication of a new NICE clinical guideline and the possibility that it will provide better support for people with the condition, we asked for feedback about health and social care so we might all consider how things are now and what can be done to bring about positive change.
We do tend to hear more bad experiences than we do good, which is perhaps not surprising given the current, inappropriate and outdated guideline, the continuing lack of medical knowledge, lack of research advancement, and no diagnostic test or effective treatment options. But there is no excuse for ignorance and a good standard of care and support should be offered to anyone with suspected symptoms or a diagnosis of ME/CFS.
In this blog, we have included a selection of comments that relate to bad healthcare experiences. We will be featuring other stories including more positive experiences as we move through ME Awareness week…
Bad Healthcare Experiences (2)
1. “I DO NOT even consider seeing my GP anymore when ill. She is too curt and dismissive and I come out feeling like a fraud (even though I only ever go to the doctors when I absolutely have to). GP's don't have a ‘pathway' to consider ME, so we get fobbed off. The last thing you need when you have ME is to have to FIGHT with the very people who are supposed to be there to help you get better.”
2. “I have never felt so incredibly unsafe in a hospital, or so unheard, dismissed, ignored, imperilled and treated with such utter contempt.
“I’ve heard of people with ME being badly mistreated by staff in A&E because they don’t believe we have a ‘real’ disease, and now it has happened to me.
“I’ve had better care and advice from the paramedics my GP called to my home than from any GP I’ve seen in the last 10 years. It took years to be taken seriously and to get a diagnosis. My GP wouldn’t even refer me to the sleep clinic – the ME/CFS specialist service had to do that (I have moderate to severe Obstructive Sleep Apnoea and now use a CPAP device but still have ME).”
3. “It is a constant battle with the NHS. It’s very unfair to have to fight for support that should be readily available when I am not well. It doesn’t seem to matter what information I send to explain the seriousness of my symptoms; most GPs and other staff at my local practice are unwilling to listen or help.”
4. “When I was diagnosed, my GP shouted at me and told me to get back to work! He then came to see me when I was bedridden and said I was too scared to get out of bed! Have you ever heard anything like it?!”
5. “I have noticed that while my doctors don’t believe ME exists, whenever l go to them about the rotten pain I’m suffering from for example, they tell me it’s due to having ME and prescribe painkillers. How can they prescribe a drug for something they don’t believe exists?!”
6. “One GP said to me, “If I could just prescribe you a little holiday, you'd feel much better.”
7. “It is no good me talking to my GP as he says there's no more he can do, and yet he has done nothing to help me!”
8. “I have had ME for 23 years and was diagnosed 16-17 years ago at Barts hospital. I avoid telling health professionals I have ME because of the lack of understanding I experienced when I did. I have never had a review or a management plan.
“All the other health professionals I have seen have, at worst, told me they don’t believe in ME, and at best, just didn’t understand it. This contrasts with the experience of friends and family with conditions such as diabetes and Multiple Sclerosis. I dread having to go into hospital as I know my ME will not be understood and my needs not met.
9. “My GP said he didn't really know much about M.E. and he would ask some more knowledgeable doctors about it. But I never heard from him again.”
10. “It depends on which GP I see. If I phrase it in terms of “chronic fatigue & fibromyalgia” one is fairly supportive. Another tells me that the best remedy is exercise, and others have said, ‘Oh well, you feel like that because you're depressed”. As if I'm too stupid to be able to tell the difference.”
We want to publish a report of the recent health and social care experiences from people with ME/CFS.
- we are looking for good and bad experiences as they relate to primary and secondary healthcare (GPs, diagnosis, referrals, ME/CFS specialist services, management, etc.), and,
- experiences of social care provision (accessibility, local authorities, care need assessments, paid carers etc.).
- We also want to hear from people who have not been in touch with health or social care because previous experiences have made them decide to opt-out.
- And we want to learn about the kind of changes you think need to be made that will improve the way in which people with ME/CFS are treated by the NHS and social care services.
Please join this week’s discussions on MEA social media, or you can write to us via email: Feedback@meassociation.org.uk Try and limit your emails to 200 words per story if at all possible. We can’t reply to every email we receive, but we do promise to read them all.
11. “I had a GP very recently say to me ‘I believe that you believe it’s real’“.
12. “I was told by a GP last month that I couldn’t have been diagnosed with ME (which I was, 12 years ago, by the head of the local ME service) because it wasn’t something that could be diagnosed.
“He refused to put ME on my current sick note and couldn’t understand why I was upset at his words and his dismissal of the last 15 years of suffering with this horrific illness.”
13. “My GP wants me to study meditation. I haven't yet had the courage to tell her that I started meditating in my 20's and that after developing ME I've been unable to do it due to the brain damage. I am afraid she's going to insist it's a matter of discipline, but it's not. And I used to teach relaxation. It feels as though doctors (many) just can't release that “psychosomatic” conviction.”
14. “I've had ME/CFS for 35 years, mostly mild to moderate, but it's had a huge impact on my life and reduced everything that I've been able to do.
“In all that time I have mostly avoided consulting GPs about it because at best the response has always been that there's no pathology, no treatment, and ignorance of all the condition means. At worst I've known I am disbelieved, discounted, and dismissed.
“I've come to realise that this is the accepted status quo and it's only in very recent times that this is beginning to be seriously challenged. I hope and pray that I have the strength to do more myself to join in challenging these attitudes because absolutely MUST change.”
15. “Saw a new GP yesterday (moved cities) and she a) refused to call it M.E. and b) told me I wasn't trying hard enough to get back to work. She has me worried that I'm going to get my benefit taken away from me, despite the fact I cannot work.”
16. “One GP said, ‘have you tried swimming?' I told the same GP ‘everything hurts so much that I want to cry but can't cry because of the antidepressants and emotional numbness' and she laughed.
“I needed a sick note to keep me in the benefit system after failing a DWP ‘medical'. This GP treated my ability to get to the surgery as sign I could work.
“Sick notes are not something they will do with a telephone appointment. My wife shouted at him. He wrote one covering only a couple of days so I had to drag myself back there again for another sick note covering a longer period.
“I saw a different GP who was nicer but wanted to make sure I wasn't ‘just laying around all day.”
17. “The GPs at my practice put everything down to ME/CFS. They don’t bother investigating anything else anymore. It’s an easy way out for them. If you don’t have it, you have no idea what’s going on. You seriously can’t study this one in a textbook.”
18. “I've had a lot of bad experiences with GPs & allied health professionals over the years and it has unfortunately contributed to my anxieties and fear of reaching out for help.
“I now have Agoraphobia on top of ME/CFS, Fibromyalgia and other diagnoses. I'm housebound and haven't been able to leave the house due to both physical and mental limitations, but my GP really doesn't seem to care, despite myself and a family member reaching out for help.”
19. “From a nurse practitioner ‘M… what?’”
20. “I had to pay my GP for a letter of listed meds and diagnosis to put with my application for benefits. Even my private chiropractor didn’t charge me for a letter. The Pain Clinic didn’t charge but were unhelpful at first when I asked for documents to support my claim. I nearly gave up it was so stressful but Citizens Advice kept me going.
“I now get PIP, ESA and have a Blue Badge but was nearly too ill to attend PIP assessment. When I got there, I was asked to wait over an hour and had to go home (luckily my friend had gone with me) then go back.
“I had to rearrange my assessment as they wanted me to travel over 30 miles. They treated my request for a more local assessment as a cancellation so left me no option but to attend no matter how ill I was otherwise would have had to apply again.”
Help Raise Awareness
We have produced an MEAW21 Media Toolkit that contains posters and graphics you are free to use during ME Awareness Week and beyond.
We’ll also update it with all the blogs and other information we will be sharing from Monday 10 – Sunday 16 May.
New Website Poll
Consider the last time you had any contact with the NHS about ME/CFS. How would you rate this experience?
21. “Even after 20 years, M.E/CFS is not recorded in my medical notes as an ongoing condition. I have to tell every GP I see at my surgery (it can be someone different every time and I don’t go so often that I am known) and every hospital doctor I am referred to that I have it. Even then my needs are not taken into account. I have had doctors laugh in my face when I have mentioned that I have it.”
22. “I think I’ve had ME for years and during what I think were relapses due to a number of infections/viruses/illnesses over the years, not once was ME mentioned by any practitioner (GP or numerous consultants in various departments) to explain the on-going fatigue I was suffering.
“Every time I caught something, my fight to get back to any kind of health was longer and harder. Now three years after the last major virus, which caused my worst flare to date, I’m suffering more than ever with a poor quality of life. Not once has a clinician asked about my history with fatigue. I was given a diagnosis of PVCFS and that was it.”
23. “Only one doctor I've seen was interested in ME. Another was sympathetic but didn't know anything about it. I never mention ME unless I have to, and I generally act like I'm absolutely fine, do what I need to and get out of there as soon as possible. I don't even go for non-ME related stuff either unless I have to.
“Most of the time, symptoms I present with are not believed/taken seriously, and/or I am misdiagnosed. I've found it quite distressing, especially having to fight my case every time it happens – it's exhausting.
“I'm also suffering with my mental health, but again, I daren't go to the doctor. Many people have had mental health diagnoses used against them by doctors who falsely believe ME is psychological, and therefore have been denied other tests or treatment.
“I have already had a doctor tell me any tests she arranges are just to appease my anxiety. I'm really struggling, but if I seek help for ME and am dismissed, which seems likely, I could be denied other medical treatment when I need it. I feel I must continue to suffer in silence.”
24. “I had a horrible crash and contacted the GP to get a diagnosis after 2 years of worsening symptoms and multiple tests and screens. After reviewing my symptoms and scans the GP diagnosed me with CFS (he refused to use the term ME).
“Then, he asked me what I knew about CFS treatment, because I surely must have read about it. I explained what I knew (from the NHS website) and how I was sceptical of GET based on ME community experiences. He said my concerns were groundless and that anti-depressants and GET are the best treatments.
“I made it clear that I had no issues with my mood or motivation, and that I was actually doing very well mentally, but I did struggle with pain, brain fog, IBS, sleeplessness, and low energy levels. GP responded that they would still prescribe antidepressants because that's the best treatment.
“I asked for a referral to a specialist clinic and they said we would discuss it some other time. I felt unheard, that treatments were pushed on me, my concerns were dismissed and no actual help provided other than diagnosis.
“I had a couple more GP appointments over the phone since then, but they never wanted to discuss ME/CFS and were only willing to focus on one problem at a time, such as my allergies. I feel let down by the NHS and avoid it if I can.”
25. “I Initially tried to ask for support when I first became ill 20+ years ago. I quickly learned that the more honest I was about how badly I was affected the more likely I was to be treated dismissively and with derision – even to the extent of being verbally abused. I avoid consulting my GP about ME, but it means I also can't access any social care.”
26. “I’ve been ill with ME since the 1970s, though I struggled on alone and undiagnosed until the 1990s. The diagnosis came as an enormous relief, and I was excited to learn, finally, what was wrong.
“The subsequent discovery that a significant proportion of the medical profession believed ME is down to inactivity and depression brought me rapidly down to earth, especially as it was exercise that had caused my relapse.
“My GP simply kept trying to force me onto yet another type of antidepressant, which always made me feel disconnected and depersonalised, perhaps because I didn’t have any symptoms of depression.
“The best solution in the early stages seemed to be to avoid a referral to the hospital-based service, in order to avoid the exercise classes I’d seen going on in the ME clinic from the ENT waiting room next door.
“After that, the strategy was to do my best never to mention ME again. As I’m significantly affected enough to need a mobility scooter to get around and have been unable to work for a number of years, this sounds absurd almost to the point of comedy.
“But it’s not funny, It’s outrageous. It has to stop; and it has to be acknowledged that an enormous wrong has been done to a very vulnerable group of people.”
27. “My GP has never been sympathetic about my severe ME but I have not been able to speak to him at any point in the last year, even on the phone. If I phone the surgery it takes 40 minutes for the phone to be answered, I book a telephone consultation and then I get a text asking me for symptoms…
“All the telephone calls and texts completely exhaust me and I am unable to do anything else for the rest of the day. Four health professionals have stated that I need to see a neurologist for immediate reassessment but so far I have not heard anything about a referral.
“I don’t think my GP realises how ill I am, how much pain I am constantly in or how much of a struggle my life is. I am wheelchair bound, my arms are very weak and when I get periods of blurred vision I can hardly see. Just how ill do you have to be to speak to your GP?”
28. “I look after my husband who, when in a bad flare-up, suffers with all over pain but more severely in his chest. In his experience of ME/CFS, GP’s either don't have any knowledge of the condition, go overboard and panic, or are downright rude to him/us.
“On one visit to a GP were told to go away and have some fun instead of focusing on the pain. I've always had a lot of respect for the medical profession but since his diagnosis have seen a very different and ugly side to their ‘care'.”
29. “Despite being bedbound for about 3 years and in a state of slow, constant decline, my adult daughter has never been given a diagnosis of ME/CFS by the NHS, even though several GPs have visited her at home.
“She was never referred to a specialist clinic or given any advice on managing her symptoms. It was only when we engaged a private specialist who came to our home that a diagnosis was given, by which time her ME was severe.”
30. “My daughter has severe ME/CFS and has been bedbound for several years. One of her most debilitating symptoms is severe vertigo which she has had for over 2 years.The above are selected extracts from submitted stories. We will be including complete stories in a report on health & social care later in 2021.
“Despite expressing concern to several GPs (3 have seen her at home) and repeatedly asking for a specialist to examine her, no referral has been made. Even when we contacted local NHS ENT specialists directly we were told there was nothing they could do as they don't do home visits.”
Russell Fleming, Content Manager, ME Association