I don’t know where to start, so perhaps I shall say this: every single attempt to get the NHS to treat me for my M.E. feels like a battle. I hesitated about writing this post, but I figure that it is probably helpful for most people to get a snapshot of what it is like to have M.E. in the NHS.
In March this year, I went to see my specialist. I had been waiting for eighteen months for an appointment, because they had for some reason marked my files as ‘archived’ instead of ‘active’. When I chased it up, (and it took several phonecalls), the most recent entry they had on my file was from 2008. It was a fight to even get to see my specialist.
At the appointment, I took along a book which detailed over 250 pharmacological treatments for M.E., with an analysis of which doctors and countries were using them, which success rates they had, and the extent of the trials that had been conducted on them. Like any illness, some medications work for some people, and not for others. There were some that were low risk and the promise of some ‘help’ rather than ‘cure; there were others that had been dramatically curative for some, but had significant dangers of side effects. Really, after six years of having a considerably debilitating illness and being told I would improve if I stuck to pacing and resting – and deteriorating in spite of this – I just wanted him to pick one and prescribe it.
But that is a little tricky. First you have to find a specialist who believes in your illness. Astoundingly, the majority of those in the NHS who are called ‘CFS/ME specialists’ don’t believe that ME exists as a neurological illness. They believe you have Chronic Fatigue Syndrome, a largely psychological illness which they believe is caused by a mixture of physical deconditioning (lack of fitness) and exercise phobia or stress that is causing your reluctance to exercise. So they respond very sympathetically and tell you you have a ‘real illness’ (being careful not to say ‘physical’ or ‘organic’ or ‘neurological’ or ‘biomedical’), and that the cure is to exercise, and keep exercising even when you don’t feel well enough. That is the treatment I was initially prescribed, and it is the reason I went from being relatively well, to being in a wheelchair. I am not alone: in the biggest survey conducted among ME patients, only 22% said they were helped by Graded Exercise therapy, and over 50% said they were made worse, some (like me) permanently.
Fortunately, I have a specialist who does believe in the existence of ME as a neurological/autoimmune illness. Unfortunately, because the NICE guidelines (the policy of what doctors can or can’t prescribe in the NHS) were heavily influenced by psychiatrists who don’t believe in the existence of ME, the only treatments that are recommended are Graded Exercise Therapy (to increase your fitness) and Cognitive Behavioural Therapy (either to get over your supposed exercise phobia, or to help you come to terms with the severe limitations of the illness, depending on which philosophy that particular Occupational Therapist signs up to). These treatments are only recommended for mild or moderate ME; for severe ME there are no recommendations, only a few mild pain killers, and a whole list of medications they don’t recommend. I have severe ME.
So you either have someone who doesn’t believe in your illness who prescribes something that has a good chance of making you worse (and sometimes permanently disabled) or you have a specialist who does believe in your illness but is not allowed to prescribe anything for it.
He said that he couldn’t give me a drug for my ME, but if I had a different condition that required treating, then it may be that that drug would have a positive effect on my ME as a secondary bonus, depending on which drug it was. So we went hunting for possible other conditions that would mean I could have a drug that would be potentially effective as a treatment for my ME.
I had a test – it came back outside of normal limits, but only just. (I had to phone up after three months to get the results – no one had told me of the results). My GP said she couldn’t interpret them, my specialist would have to do it. I phoned my specialist – he said before I could have a drug, I would have to have another test to rule out a different condition, and he couldn’t prescribe or arrange that test for me, my GP would have to, and she would need to arrange for a specific doctor to do that test because others in that department don’t believe that ME exists and would be exasperated that their time was being taken up by an ME patient.
I told my GP, who reluctantly agreed to do the referral. Another three months went by. I phoned up again to ask when I could expect the appointment with the referral doctor. After several phonecalls, it transpired that no one had made the referral. My GP was frustrated that my specialist wasn’t answering any of her letters, and she said that he should have done the referral in the first place. In the space of two days, both my GP and my specialist made a referral to have the additional test done – but my form didn’t go to the particular doctor, it went to the general department, who said it was a waste of their time and they didn’t deal with M.E.
It was now seven months since I saw my specialist, and I was back to where I started from. I phoned the CFS/ME service to ask if I were able to have another appointment with my specialist, because he had said I could have a follow-up appointment in six months, and I hadn’t heard anything. The lady said that there was a very long waiting list, and new patients were having to wait up to two years for an appointment, because the service is so under-funded. I cried.
A few days later she rang back with an ‘urgent’ appointment, in November, which will be eight months since I last saw him. I am in worse health than I was eight months ago. I am not getting better.
M.E. is an illness that is pushed to the bottom of the NHS queue, with only a few in the system even acknowledging its existence as an illness. These are the results of this:
I am battle-weary. I am tired of being my own doctor, tired of not having an advocate in the health system, tired of begging for appointments, tired of tearily pleading for someone to take my illness seriously and actually give me some sort of treatment plan.
I am tired of being told I have Chronic Fatigue Syndrome, when in fact I have Myalgic Encephalomyelitis, and I am not merely ‘chronically fatigued’: my symptoms include vertigo, chest pains, paralysis, tachycardia, an occasional inability to understand speech or to talk, burning muscular pain and shortness of breath. I am, however, chronically fatigued – which is to say long-term bone-weary-tired – of having to battle the system in order to attempt to get some kind of help.
I am tired of researching clinical trials and experimental treatments and alternative medicine.
I am tired of advocating for those who are even more ill than me, who are bedbound and in constant pain, and who are being denied benefits or treatment because apparently all they need to do to get better is get out of bed and do some exercise.
I am tired of writing letters of protest into the ether.
I am tired of researching private doctors and looking at their fees and wondering about their protocol and success rates.
I am tired of writing my book, which gives carers and friends an idea of what it is like to have ME.
I am tired.
This state of affairs is not okay, it should not be, and I need others to stand with me and say that it is not okay. I don’t really know what to do, but I just wanted to write and be honest about where I was at. Thank you for listening.
(I may be taking a little blog break for a week or so – the visit of my MP was great, but I overdid it, and this has triggered a big relapse, so I am trying to rest. I have an appointment with my specialist in a couple of weeks, and I am hoping that I will have some more answers then, but I fear I will not. Prayers from those who pray are appreciated.)
- For more information on ME, go to Hummingbird Foundation for ME, and for latest research news, go to Phoenix Rising.
- There is a new documentary, Canary in a Coal Mine being made in order to increase awareness: to read more and donate to this project please click here.
- To help with badly-needed research: one of the best hopes of a cure for ME at the moment is a cancer drug called Rituximab, which has had very positive effects for severe sufferers in a small trial in Norway. To donate click here. (The government has not donated any money to fund this trial. They have, however, given money to a £1.25 million project to research Graded Exercise as a cure for M.E. in children.)
Tanya – this will resonate with so many of us. You’re right – it’s not okay: thanks for your openness.
Lovely Emma – thank you so much. It helps just to feel supported.
Oh, friend. You’ve told me much of this but to see it laid out like this is frustrating and heartbreaking. I am so sorry that you’re not getting the answers you need- the actual help you need. I cannot believe doctors refuse to admit ME is a legit condition! I’ll be praying for you. xoxo
This comment made me cry a little – I think just feeling thankful for your friendship. Thank you, Leigh.
Hi Tanya, thank you for explaining for the benefit of those of us who don’t know. I have over the last 3-4 years seen the NHS at it’s best and worst. In my case it took nearly 2 years to diagnose IBS, after gall bladder surgery. My experience included a “specialist” who treated me like something nasty on his shoe and told me to take paracetamol. I finally saw a lovely woman consultant who actually apologised for not being I able to treat me……
In the meantime my brother and dad have been in an out of hospital and it has gone from the sublime to the ridiculous ….
I will pray – I can do that and believe that prayer works. My dad nearly died in July, he had septicaemia it was touch and go, but we had the NHS at it’s very, very best – I firmly believe that all that was done for dad was absolutely under God’s control.
Thank you for all that you do,
Thanks so much for taking the time to comment. I’m sorry the ‘specialist’ treated you so badly – I know how horrible and disempowering it is to be dismissed by the people who are meant to be helping you. And thank you for your prayers – I value them immensely.
Tanya, I’m so sorry. What a huge burden for someone already coping with so much. I don’t have ME, but I have seen this with doctors treating my endometriosis. It is also a misunderstood illness and one for which I have been treated to the hilt, but not with anything effective. I’m American, so it isn’t just your NHS, though it probably makes it worse. Prayers and hugs your way!
I’m so sorry to hear of the hassle you’ve had getting treatment for endometriosis. It’s interesting you should mention that illness, because Hilary Mantel (Booker Prize-winning author) has written of her experience with dismissive doctors who diagnosed her with a psychiatric illness before she finally got a diagnosis of endometriosis. It makes me wonder how much is influenced by the fact that ME affects women much more than men – that chronic pain or illness is dismissed as hysteria?
Thanks so much for stopping by and feeling it with me.
Alas, I think you’re on to something with regard to diseases that primarily affect women. My ob/gyn has never dismissed my pain, but other doctors have made light of it, one saying lots of women came to him with pain for which he can’t find a source. That doesn’t mean it’s not there, jerk, it means you haven’t looked hard enough! How I wish the perception that women’s pain isn’t to be taken as seriously as men’s would change fast!
“That doesn’t mean it’s not there, jerk, it means you haven’t looked hard enough!” Exactly!!
Hey Tanya, Your post brilliantly demonstrates the Kafkaesque nonsense that PWME have to go through, as if being severely ill is not enough. I often feel we were better off in the 80s, back then I was given a plasma exchange and immunosuppression, and Imunovir, by consultant neurologist who diagnosed me. These were experimental treatments, but at least I was being treated – and respected – for the neuroimmune illness I have. This clique of psychiatrists in UK have done so much damage and it is going to be a long time until we see balance being restored. I wish you better health.
Thank you so much for stopping by here and for your encouraging words. That means a lot, coming from a respected writer!
It’s really interesting to hear you saying it was better in the ’80s – and plasma exchange was one of the things I was looking into (but don’t think I have much chance of getting). I agree that this clique of psychiatrists have been incredibly damaging. I really hope that the balance is finally shifting.
Oh Tanya, it is NOT ok! It is absolutely not ok! I’m crying as I read this because I’m feeling bone-weary tired of the fighting too and I hate that we have to be are own advocates and I really hate that Drs are so dismissive of this illness that they think it is acceptable to say ‘I don’t want to treat that patient because I have no interest in M.E’!
This week I finally got a letter 6 months after being referred to say I can have physio at home from the CFS/ME clinic, yet the word physio still instills fear in me because it is so often synonomous with GET.
I don’t really have a point, I just want you to know that you are not alone in feeling this way
Sending you much love xxx
Oh Jess – this made me cry, because you are one of the people that I ache for, that makes me want to smash this whole rubbish system to bits and get you some proper care. Praying for you – hoping the physio will be helpful and not impose any rubbish GET on you. If you are too tired and need someone to advocate for you, I am always available. I will not let them give you grief. Thank you so much for stopping by – I really appreciate it. xxx
Don’t think you have fatigue either. Does it behave like normal fatigue/athlete’s fatigue? Probably not if you’re like me and other ME folk I’ve talked to: there is a delay between the activity or stressor and the symptoms, and a prolonged recovery time. Like an inflammation.
I call this ‘quasi-fatigue’: a deliberate attempt by the immune system to mimic fatigue, which makes you rest with a normal infection. With ME (and similar) it is constantly switched on.
Have a look at my own blog for an expansion of this idea:
I agree that you won’t get much joy from medics in the UK. I actually got thrown out of an ME clinic for maintaining that what I had was not best diagnosed as ‘fatigue’. All we can do is wait.
“a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.”
“Using “fatigue” as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion. No other fatiguing disease has “chronic fatigue” attached to its name – e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue – except ME/CFS. Fatigue in other conditions is usually proportional to effort or duration with a quick recovery, and will recur to the same extent with the same effort or duration that same or next day. The pathological low threshold of fatigability of ME described in the following criteria often occurs with minimal physical or mental exertion, and with reduced ability to undertake the same activity within the same or several days.”
Thanks, LIz- this is a useful quote to have on hand.
dear tanya, you are amazing. how ever rotten you are feeling you always try to reply to everyone. xxxxxxxxxxxxxx
And you are amazing for always having my back! Thanks, lovely lady. 🙂
Hi Jamie – thanks for stopping by – I had a read of your blog. I can’t believe you got thrown out of an ME clinic for saying that what you had wasn’t best classed as fatigue! Crazy! And yes, you’re right – that delay does make it distinctively ME-like. Thanks for your comment
Tanya. I’m praying for you. x
Oh, thank you, Helen. I always appreciate your support and encouragement.