MEAW21: “I was diagnosed by the ME/CFS specialist service but have since been discharged because I’m too ill to attend!”

May 12, 2021


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 about secondary care and referrals to ME/CFS specialist services than we do good, but there are some examples of good practice that we would like to see taken on board by all secondary care providers.

It is not surprising that we hear so many bad experiences. given the current, outdated guideline, the inappropriate recommendation for graded exercise (which we feature in a blog tomorrow), a lack of individualised treatment options, a continuing lack of medical knowledge, and seeming failure to listen to and take into account what people with ME/CFS have to say.

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. The new NICE guideline has indicated that many existing ME/CFS specialist services and other secondary care providers will have to learn new ways of working with people who have this medical condition.

In this blog, we have included a selection of comments that relate to secondary care referrals. Some of them are good, but most leave a lot to be desired…

Secondary Care Referrals

1. “I had one consultant say to me, “well I don’t think you’re mad”, but the tone of voice said something quite different. If only they could step inside their patient’s body for just one day and experience what ME/CFS really feels like…”

2. “I have had moderate to severe M.E. for 20 years. I found Liverpool Royal to be an excellent ME/CFS multi-disciplinary team. Then I moved to Wales and for the last 16 years there has been no support – absolutely no help from the NHS at all! My husband is a qualified RMN and Nurse and had to give his job up to care for me.”

3. “Was diagnosed nearly 15 years ago by a fabulous doctor at Bart’s in London. I’ve since moved back up north and my current doctor does not believe in M.E. I saw a locum who referred me to the ME clinic in Leeds but when things got worse I asked my GP to refer me back to the specialist so I could get help with my PIP claim and she refused. I was told by the locum I could have antidepressants instead and to take a week off work! Still waiting to see my cardiologist and an ME/CFS specialist after 2 years of asking for referral.”

4. “I’m housebound with severe ME/CFS and have been ill for over 20 years. I was only diagnosed 6 years ago. Aside from the length of time it took before anyone finally listened to me about my symptoms and the problems I have had to deal with, and to refer me for diagnosis, the worst issue  I’ve had is with ME/CFS specialist services.
The ME/CFS specialist service has been useless. The pain management group was mindfulness based, rheumatology was not up to date on ME/CFS and recommended GET and CBT based on the deconditioning model. Neuropsychology were the same and wanted me to go into a mental health facility for two weeks minimum. I refused.”

5. “My GP is sympathetic but not very helpful. Anything to do with ME she says she’s not an expert and I should be referred to the Bristol ME/CFS clinic. I don’t want to go there as it’s a bit too far for me to drive myself (unless it’s a good day) and the team comprise only an occupational therapist and psychologist, so they won’t help with the investigation of co-morbidities. I feel I have been left to manage on my own.”

Feedback

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.

6. “Recently had an appointment with a specialist. I waited months and months to finally get the referral and all he did was invalidate/dismiss my symptoms.
“He told me that if I exercised, I’d be cured and would be able to do everything I wanted to do. He also asked me rudely why I was even in a wheelchair and said that it wasn’t important to him to look into anything because I wasn’t dying.
“Of course, it’s not important to you, sir, it’s not your life, but it is important to me to know why my body hasn’t worked since I was 12! That’s only a few of the things he said and I just cried my heart out when I left the appointment.”

7. “I’ve had ME/CFS for nearly three years and looking over all my interactions within the healthcare system really makes it hard to trust doctors. I do at least feel happy that I’m in contact with an Occupational Therapist via the ME/CFS specialist clinic in my region, and she’s lovely.”

8. “I can’t get help with disability benefits or occupational health, no carers or support. There is no help In Hull, East Riding Yorkshire, where they still only diagnose CFS not ME and referral is made to Psychological Services.
“That service offered no help except a DVD explaining pacing and 7 psychological sessions but I was too ill to attend my 4th and was struck off. “The therapist didn’t have a clue about ME or CFS anyway and it was more traumatic to go as travel plus an hour with someone who doesn’t understand just made me relapse.”

9. “After 2 years, I was referred to an intense pain management course under the community chronic pain team. It made me less confident about managing my chronic illnesses and showed very little care and consideration about what it is like living with these conditions.
”Breathing exercises and stretching are supposed to cure all physical and mental illnesses along with mindfulness and meditation in order to relax. What I don’t understand though is how you can be expected to relax when in constant pain, physically and mentally exhausted and dealing with many other complex symptoms.
“Pacing – my least favourite word. I understand how important pacing is however for me, I find pacing almost impossible when going to university and placement. I was told by these people to give up university and my dream of being a teacher because I should give up anything that heightens my pain and fatigue.
“In my opinion, this course is medical gaslighting. I felt belittled, like my symptoms were invalid and all in my head. Something that is supposed to help you, should not make you feel this way. I would not want anyone to go through this and I think the pain management service needs to massively change before taking on any more chronic illness patients.”

10. “I attended a local ME/CFS service sometime after my relapse, when I finally had the energy and mental capacity to cope with the course.
“I wanted to understand if low ferritin could be contributing to my symptoms and could even explain why I had always felt so run down. This was after years of being told ferritin didn’t make any difference by various GPs and without knowing it is one of the key tests the ME Association recommends.
“I was told there was no clinician working within the service and it was not something they could help with. I was asked to speak to my GP about the matter. The service offered no holistic approach or assessment of needs on an individual basis, and there was no on-going support from the service once you had done the course.”

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?

11. “I was referred to the Dorset/ME Service by my GP, because she thought it might be able to prescribe nimodipine off label, which had helped me in the past. I had a telephone appointment with Dr XXX, in September 2020.
“I had very little opportunity to tell him my current symptoms, but he told me to, ‘forget about nimodipine’. Instead, he recommended amitriptyline and duloxetine, along with CBT.
“I told him I had had ME for 38 years and had tried all three of these treatments many times before and they had made no difference to my condition. Nevertheless, he insisted on them and dismissed my view that there was no point. He then wrote to my GP saying, ‘Real life experience does tend to make her come over as somebody who is putting barriers in the way of recovery’.
“I took the two medications for 6 months and had some telephone appointments with the clinic’s occupational therapist. My condition has not changed. In fact, I have been in my worst relapse for several years.
“I’m told that it is not possible to have a follow up appointment with Dr XXX. In summary I found his attitude unhelpful and patronising and our discussion was superficial and dismissive – not at all what it should be for a clinician in an ME/CFS specialist service.”

12. “I was tested for POTS. I went to hospital as a day patient over four days. The woman who did my tilt tests was sympathetic, listened to me, and took what I said about ME seriously. However, the woman who did the exercise test was not understanding and dismissed me when I said exercise was harmful and that I had concerns about it.
“The tilt test immediately triggered very strong ME symptoms. I told the day ward nurses I needed to lie down flat in darkness to stop it getting worse, but there were no beds on the ward, so one suggested a couch in an empty doctor’s office with the lights off.
“It was a scary experience as the symptoms were really bad and I was so brain fogged – everything around me looked unreal and I felt confused. Most of the nurses were kind but they didn’t know what to do with me and the dismissive attitude of the head nurse made me feel frightened.
“I was left to deal with it on my own. This was traumatic and I have avoided specialist referrals since then, as I don’t trust them to appropriately deal with any ME flares triggered by tests or treatments.”

13. “After six months, I was diagnosed by the brilliant Dr XXX at Pocklington surgery and he referred me to the Yorkshire Fatigue Clinic. This was during last year so all clinic sessions were being held virtually.
“Sue Pemberton and her team there are FANTASTIC at focussing on the individual’s needs/symptoms/mindset and group you with a couple of other very similar patients for your regular group sessions.
“It’s like a combination of therapy and learning (and like being back at university, it’s fantastic!). I’ve learnt about WHY I get different symptoms and HOW to manage them, so it’s all-encompassing. I am regularly reminded that I am in control of my mind and body which has really given me a huge amount of confidence to try and overcome ME.
“I have a friend with almost identical symptoms/severity as myself, who also works full time, and is registered with the same surgery (but who sees a different GP). She was repeatedly denied any referral because ‘she works full time so it’s not worth the NHS’s money’. I am incredibly lucky to have got the referral I did and I wish it could be the same for others.”

14. “I have had ME for 10 years. It took three years for me to get a GP referral to a specialist unit and a further seven years to see a specialist consultant. It’s been a long haul.
“Along the way there have been some very unhelpful things said to me by GPs and other health professionals, however I would like to sing the praises of the ME/CFS specialist service at the Barberry Centre in Birmingham and in particular thank you for the amazing report I have received from  XXX (nurse therapist) and Dr XXX.
“They have shown me amazing support and compassion. It has been wonderful to be listened to, believed, understood, and helped. I wish that all with ME could experience this level of care.
“Of course, they have not been able to offer a cure – that’s still some way off but they have given great advice on how to cope with the disease and been thorough in arranging tests and pointing me to helpful therapies wherever possible.”

15. “I was diagnosed by the ME/CFS specialist service at a hospital (I was under them but have since been discharged because I’m too ill to attend!). I haven’t got a specialist to see or seek advice from now, but thankfully my GP is knowledgeable. He can’t help further but at least he understands which is half the battle I think.”

The above are selected extracts from submitted stories. We will be including complete stories in a report on health & social care later in 2021.

Russell Fleming, Content Manager, ME Association

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