My ME started with a virus in 2011, some months after the birth of my daughter. After the virus had apparently abated, the first symptoms I noticed were numbness, tingling, and pins and needles in my hands and feet; body temperature disturbances; vision problems; dizziness; clumsiness; pain; muscle spasms and weakness; sleep dysfunction; and cognitive impairments.
For 18 months the GPs at my local surgery refused to take me seriously. They didn't believe I had anything physically wrong, dismissed my reports of physical symptoms, and said I was depressed. I knew this was not true, and that although I was extremely fed up and frustrated, this was a response to my physical symptoms rather than the cause of them.
I have a long history of depression, and I know myself well; I am not ashamed to ask for help if I feel the grey fog of depression descending, but I knew that what was happening to me this time was very different to depression. In the end, though, they wore me down; I started to think that maybe they were right, maybe this was just a different type of depression to what I'd had before. So I agreed to go on antidepressants (strangely enough, they made no difference to my symptoms), and I pushed myself to exercise, walking for miles several times a week despite severe agony and increasing weakness in my legs. I am extremely motivated to be as healthy as possible so that I can live a full life and be a good mum, so I did everything I could to ignore my symptoms and push myself to try to shift the 'depression'; unsurprisingly, following this approach just made my symptoms worse and worse, because I wasn't depressed in the first place. I had to leave work - a job I loved and was good at, in the NHS - in April 2012. I had to pull out of social activities and various commitments. I needed increasing amounts of help to look after my daughter. And still the doctors refused to believe there was anything physically wrong. I was not diagnosed with ME until February 2013, when I was finally able to convince a GP that I was not depressed.
I am convinced that, had I had an early diagnosis and appropriate advice (ie, rest, and don't ignore symptoms or try to 'push through' them), my ME may have stayed moderate; instead, I continued to deteriorate. My ME only started to stabilise when I did my own research about the disease and started listening to my body, resting more, and stopped ignoring symptoms. However, the damage was already done, and due to that damage as well as other factors, I am now severely affected.
I am now housebound, can only get up or down stairs using a stairlift, and we have a 35 hour per week care package funded by social services to care for me and my daughter so that she can keep living with us. I need help with my personal care. I have significant cognitive impairments. On my worst days I am partially or completely paralysed. I am not able to look after my daughter (see this post: "Parenthood and ME: A Difficult Combination" which describes my experiences of parenting with ME). I am not able to work or socialise. I depend on my increasingly stressed husband for everything, and even though he works full time, we have to rely on my sickness and disability benefits to get by. This is not how I want to live my life. At the age of 37, I did not expect to need a stairlift or carers or benefits. I have gifts and talents to contribute to society, and I would love to be able to work again. I have so many dreams, ambitions, and goals, which are now totally out of my grasp.
And this is not the life I wanted for my husband or daughter. They deserve more, so much more. I would give them the whole world if I could, but some days I cannot even give them a cuddle.
Of course, I would like a cure. Even hope for significant improvement would be nice. But I know there are no magic wands, and that there's no cure on the horizon. I accept that this is a lifelong disease. But is some kind of support from the medical profession really too much to ask?
I have tried to get medical help, I really have. I've seen the local 'ME/CFS' clinic. My GP wrote to a neurologist asking their advice about my neuro symptoms. I've tried to find a UK specialist - any specialist, whether NHS or private - who a) believes that ME is a real organic neurological disease and therefore won't try to section me to a psychiatric hospital, b) has an accurate understanding of the disease and how to treat it, and c) understands enough about it to know that I, as a person housebound with severe ME, am not able to leave the house to attend hospital appointments, and need a home visit or some kind of remote consultation. In case you're wondering, such a specialist doesn't exist, or if they do, they are in hiding.
Since my diagnosis, my GP has been kind and supportive, and wants to help, but she doesn't know much about ME or know what to do to help me, and I haven't had some of the basic standard neuro examinations. It is difficult to access GP care, as I am rarely able to attend the surgery, I find telephone conversations very difficult, and it can take me months to write an email. In addition to ME, I also have long-term gynaecological problems, which are currently getting worse and cause me significant pain for 2 weeks every month, but are uninvestigated and untreated because my ME means I am not well enough to attend hospital appointments.
As for my treatment by the neurologist and ME clinic, both were complete false starts. The neurologist replied to my GP's letter saying that he would not see me because my neurological symptoms fit my diagnosis. This still baffles me; in what universe would it make sense, or be acceptable, for a doctor to say to a patient with, say, a broken leg, that they would not put a plaster cast on or even examine them or do an x-ray, because the reported symptoms match the diagnosis?
My experiences with the ME clinic, though, were in a whole other league. I was fortunate that they did not try to force me into trying the dangerous Graded Exercise Therapy, however they were still worse than useless. Prior to my first appointment, I had to fill in numerous forms detailing my symptoms, which left my hand very weak and in severe pain. To actually see the ME clinic, I was required to travel the 45-60 minute journey to their base. At this appointment, I was given no choice but to walk far further than I safely could, and to sit in a painfully bright and noisy waiting room. When I saw the 'specialist' - who was a 'GP with a special interest', not the consultant himself - he simply asked me various questions, carried out a cursory examination, and confirmed my diagnosis. He did not look at the forms I had filled in. He made no attempt to answer my many questions about management and treatment of my disease; his only response was that they were 'good questions', and that the answers to them would be covered in the follow up appointments. It took me over three weeks to recover from the huge overexertion of that appointment. They later sent me a date for a follow up appointment, again at the clinic, however I could not afford to risk such a big activity again, so I eventually (after a lot of effort from myself and my Mum) managed to get the service to agree that the follow-up appointments would be at my local GP surgery, as I was informed that home visits are not possible even for the house-bound.
Over the next few months, I had three one-to-one sessions with an OT from the ME service. These appointments consisted of large amounts of patronisation ("good insights, Rachel!"); discussing what I already do to manage the condition, and telling me to keep doing it; and information about stress management (which was not new information to me) and meditation/relaxation (which made no consideration for my cognitive impairments which make learning new things extremely difficult and stressful). I did also receive some information about gadgets to help with preparing vegetables, although unfortunately they were not appropriate for me due to muscle pain and weakness.
However, all other requests for specific advice, eg on strategies to balance my responsibilities and energy levels throughout the day, support for my husband, or symptom management, have been met with a ‘no’, there is nothing that can be offered by the ME service, and the advice (yet again) to just keep doing what I’m doing. There was no discussion about support from or referral to other agencies such as social services, wheelchair service, dietitian etc – in fact I was offered very little resembling anything in the (already woefully inadequate, inaccurate and inappropriate) NICE guidelines for the management of ME. I was desperate to return to work as soon as possible, but was told by the doctor at the initial appointment that I must not even consider working at the moment, and the OT agreed with this; to my knowledge, however, this was never put in writing to my GP, despite my repeated requests.
At my third appointment with the OT, I asked if I could have some form of contact with the consultant, to obtain medical advice about symptom management; at first the OT did not understand my question, asking, "In what context?" When I replied, "In the context of managing my symptoms", and gave her examples of pain, sleep dysfunction, and cognitive problems, she again told me that this is not something they offer. She suggested that I ask the advice of people on internet forums about what medications to try, and then gave me a poem about loving yourself as you are (see image below). This poem was completely irrelevant to me; I am not depressed, and I felt that giving me a poem was an odd and insulting response to a request for advice on medication and other methods of symptom management.
|'That Poem' from the OT (click to enlarge)|
I was extremely disappointed – and mystified – that a service, which purports to be a specialist service for the management of ME, cannot give medical advice including on symptom management. I was also very surprised and concerned to be advised by an NHS professional to ask medical advice from random people on internet forums, which could be potentially dangerous.
Not surprisingly, I left that appointment in tears. There had been a great physical cost to attend these appointments, which contributed to the worsening of my condition; I had needed help to get there; and it took considerable time for me to prepare for and recover from the effort required to attend each appointment. I had hoped that the support and treatment I received would be worth the physical cost, but it was now undeniable that no adequate or appropriate support or treatment would be forthcoming. A few days later, in late October 2013, I found an email address for the lead consultant of the ME clinic, and emailed him with a summary of my experiences with the service, my concerns about the way I had been treated and the advice I had been given, and asking him for information about other ME specialists who may be able to help me. I received no response. I emailed again, to no avail. I spoke to his secretary, who promised to forward my email to him; again, no reply. In November 2013 I asked PALS for help, and eventually received a reply from the consultant through PALS in January 2014. This is the entirety of the consultant's response that I received:
"I have reviewed the notes regarding this lady and she has recently had a full, careful assessment by my colleague [the 'GP with a special interest']. I would encourage her to engage fully with the evidence based advice offered by the specialist Occupational Therapist. As she is severely affected by her condition any domiciliary intervention would be from [the 'GP with a special interest'] as I am not funded to carry out telephone or domiciliary diagnostic visits."
PALS liaised with the ME clinic on my behalf, as I was too unwell to do so myself. Subsequently, in March 2014, I received a home visit from the 'GP with a special interest' and the OT I had previously seen. They were with me for about one hour, during which time it became abundantly clear that they had no understanding of what ME really is. For example, I had recently been on some neuropathic pain medication, which I had had a very bad reaction to; the GP seemed confused about why I had been on the medication, and asked why I have pain. My response of, "I have pain because I have ME, it was one of my first symptoms" seemed to be met with confusion. He continued their policy of refusing medical advice about symptom management, said no medication is recommended for ME, and simply raised his eyebrows when I said that there are several medications which international ME experts recommend. By this time, I was utterly exhausted and having great difficulty continuing the conversation, so I pushed no further.
The appointment ended with a discussion about follow up, as they wanted to see me again; I politely asked what the benefit would be, as I was at risk of having to send my daughter to live elsewhere (my mum had recently had to have a discussion with my social worker about whether my daughter should go into foster care, as I could not look after her), and I was unwilling to risk the repercussions to our family of my further physical deterioration if there would be no benefit. They could not give any explanation of what they hoped to offer or achieve by following up with me, but continued to insist that they should. It was left with them saying they would contact me; thankfully, over a year later, they have yet to do so.
Since then, I have continued to try to find any specialist, whether NHS or private, who may be willing and able to try to help me, but have so far drawn a complete blank.
The above, then, is the sum total of the medical intervention I have received for my ME over the last four years. The only thing I have to show for it are opiates, other pain medication, and sleeping tablets, all prescribed by my GP, and That Poem. In four years, I've not seen a single medical professional who actually really knows anything about ME. In the meantime, despite my best efforts, my condition has steadily deteriorated, my life is extremely limited, my husband has come close to breaking point, and I have lost close friends due to their refusal to believe in the reality of ME as a serious neurological disease.
I am one of the fortunate ones
Despite all of the above, I honestly regard myself as one of the fortunate ones; there are people who have much more severe ME than me, and there are people with ME who have been denied social care and/or disability benefits, so they struggle on in poverty, and/or are unable to carry out basic self-care such as personal hygiene, or preparing proper meals for themselves. Plus I remain extremely grateful that I have not been subjected to the barbaric and abusive medical 'treatments' that so many others with ME have endured, which has proved fatal in some cases. These can range from inappropriate use of Cognitive Behavioural Therapy to cure what is erroneously seen as 'false illness beliefs', to the dangerous Graded Exercise Therapy which teaches people to ignore their symptoms and increase their activity levels beyond what is safe for that person, which can be fatal (see these links: http://www.meactionuk.org.uk/CRITICAL_CONSIDERATIONS.htm, http://www.hfme.org/meandmistreatment.htm, www.hfme.org/cbtandgeteffects.htm and www.hfme.org/cbtandget6.htm.)
These articles include references to an ME patient, the British MP Brynmor John, who died while leaving a gym, having been advised to exercise himself back to fitness. Further discussion of his case can be found in four articles starting here: https://theothersideofthestretcher.wordpress.com/2014/07/16/get-and-the-house-of-commons-gym-part-1-2/
Then there are the mind-boggling incidences of ME patients having their food placed out of reach and denied help with eating, because medical staff believe they are faking their illness, and they think that when the patient gets really hungry they will stop the pretence and feed themselves; people who are unable to swallow being denied feeding tubes because staff believe that the patient has a psychiatric illness and is simply refusing to eat, despite medical experts' testimony that the patient is genuinely physically ill with a neurological disease, ME; and even an horrific incident when a young ME patient was put face down in a swimming pool because the staff didn't believe he was really paralysed. See: www.ahmf.org/ww-ean.html, www.ahummingbirdsguide.com/wmarwillcosi.htm, and www.ahummingbirdsguide.com/wmarwilltstrsaep.htm.
So yes, I truly am one of the fortunate ones. As difficult as my situation is, things could be much, much worse, and it is frightening to seek much needed medical care when you know that doing so could lead you vulnerable to medical abuse.
Mis- and Missed Diagnoses
There is another issue here. ME does not make a person immune to getting other diseases; in fact, it increases the likelihood of some diseases, such as certain forms of cancer. However, as soon as you have an ME diagnosis, you typically become invisible and irrelevant to the medical profession, and any new symptoms are dismissed and ignored without investigation.
In addition, some experts estimate that up to 40% of people diagnosed with ME - or the meaningless waste basket diagnosis of 'chronic fatigue syndrome' (CFS) - actually have other diseases, many of which can be fatal, and many of which are treatable. (In fact every diagnosis of CFS is a misdiagnosis, as CFS is not a distinct disease but a description of a collection of symptoms, which can be caused by numerous different disorders; a few people with a CFS diagnosis will have ME, but the majority have other diseases.) The list of diseases that patients have turned out to have, rather than their previous misdiagnoses of ME or CFS, includes cancer, MS, thyroid disease, and many more. What if I don't in fact have ME? What if myself and many others have other potentially treatable conditions, rather than (or as well as) ME? Doesn't everyone labelled as having ME or CFS deserve a proper diagnosis and appropriate medical care?
The medical investigations I have had are minimal, certainly not enough to accurately diagnose ME or to rule out many other diseases. Unfortunately I believe my ME diagnosis is correct, but I must admit that I find myself thinking that, if I have to be ill, I wish I had pretty much any other disease; anything to actually get some medical help rather than being swept under the carpet. People are shocked when I say I'd be thrilled if it was found I'd been misdiagnosed and actually had MS rather than ME. Not that I want to have either disease, but if I have to have one or the other, seeing as they are so similar clinically and share many symptoms and have similar prognoses (see www.hfme.org/mevsms.htm), I would rather have the one that doctors and the general public actually know about, that the medical profession would actually attempt to help, that I wouldn't have to constantly convince people that yes this is a real physical serious disease and no it's not just tiredness or lack of motivation or fear of activity etc etc. I have worked with people with very severe MS, I have seen how bad it can get, I know the suffering can be profound and devastating, but I would still prefer that to ME as the suffering can be just as devastating and profound in ME but, at best, I am left to whither away on my own and the medics couldn't care less. I would even prefer to have cancer (see http://mamachillandme.blogspot.co.uk/2014/03/me-sorry-im-not-fluffy.html); at least it would either kill me or I could get some form of life back. Anything to escape this never ending desert of pain and medical neglect. And my family and friends would have some understanding of what I was going through without me having to educate them, and I would not have people thinking that I am just not trying hard enough to do things or to be healthy.
What if I have been misdiagnosed, and have some other disease that could be treated, and from which I could regain some kind of life? Or what if adequate research and treatment was given to people with ME, to manage the disease better? What if social services did not have to spend thousands each month providing care for me? What if I did not need to receive sickness and disability benefits? What if I could work again, contribute to society, and resume paying income tax? On every level, it makes complete sense to start giving people with ME (and also those misdiagnosed as having ME or CFS) the medical attention they deserve, and it is a dangerous and unjust travesty that this is not currently happening.
Campaigning for change
In the 1980s, AIDS patients took to the streets to demand medical help for their disease. In a US government hearing in August 1983, one patient, Roger Lyon, made the following statement:
"I came here today with the hope that this administration would do everything possible, make every resource available – there is no reason this disease cannot be conquered. We do not need infighting. This is not a political issue. This is a health issue. This is not a gay issue. This is a human issue. And I do not intend to be defeated by it. I came here today in the hope that my epitaph would not read that I died of red tape.”
The level of suffering in Severe ME has been compared to that endured by people in the last few weeks of their battle with AIDS, but ME suffering goes on for decades. The suffering in severe ME can also be comparable with heart failure and MS. It is simply not possible for most people with ME to take part in rallies or government hearings. I do what I can from the confines of my home, but I remain unseen, and my voice is easy to ignore. We cannot force ourselves into the limelight, so ME sufferers are 'out of sight, out of mind'. Deaths due to ME occur from heart failure; damage to various organs; starvation; dehydration; suicide; and from secondary diseases such as cancer, which ME increases our risk of. How many thousands have suffered and died alone, in extreme pain, with inadequate medical and palliative care, while society continues to ignore people with ME because they think we are merely 'chronically fatigued', lazy, and deconditioned?
Like AIDS, ME is a health issue, and a human issue. It affects all ages, genders, ethnic and social groups. It should not be a matter of 'belief'. There is ample evidence in many thousands of medical studies which prove numerous physical abnormalities and dysfunctions in people with ME. As Professor Keller recently stated, "It is intellectually embarrassing to suggest that ME is a psychological illness." Those who choose to ignore the scientific evidence, who refuse to treat people with ME because they don't believe it's a real organic neurological disease, who defy their legal obligation to abide by the World Health Organisation's classification of ME as a neurological disease, who lump ME in with the waste basket diagnosis of 'chronic fatigue syndrome', and those who propagate the unfounded belief that ME is a psychiatric issue and force patients to undergo dangerous Graded Exercise Therapy, should be stripped of their medical qualifications and charged with medical negligence and abuse.
I do not intend to be defeated by ME; I will do all I can to maximise my health and find ways of getting as much out of life as possible within my limitations. I will keep fighting (see my post: "Do Not Go Gentle"). But there is only so much difference I can make to my own health without medical intervention. Why am I any less deserving of medical help than someone with multiple sclerosis, AIDS, cancer or diabetes? Why does it not matter that my life has been ripped away from me?
People who have ME need consultant led multi-specialism care, including neurologists, immunologists, endocrinologists, etc. We need proper diagnostics, including brain scans. We need medical staff who actually know something about what the disease really is, who give appropriate advice rather than pushing dangerous 'treatments' such as exercise therapy. People who are housebound need home visits, and communication by Skype, email or phone. We need adequate funding for proper biomedical research. We need access to proper treatments. We need people to take this physical disease seriously, and to stop thinking that if only we tried harder we would be healthy (see http://jessicagimeno.com/?p=3344). We need to be able to seek specialist medical care without fear of abuse from those who are supposed to help us.
ME should get the same funding allocated for treatment and research as other clinically similar diseases such as MS and AIDS. As it is, we get virtually nothing spent, and what money is available is spent on treatment approaches which have been proven unbeneficial and dangerous, and on deeply flawed and unethical psychosocial research using mixed groups including people who don't even have ME! We're not asking for special treatment, just treatment equal to that given to people with other diseases.
I am simply too ill to take to the streets to attend campaign rallies demanding proper treatment. People with ME need others to fight on our behalf. Please don't allow government and society to continue to ignore people with ME. Please don't let my epitaph, and those of countless others, read, "They died of medical neglect, ignorance, apathy, and political vested interests".
Please sign this petition: http://you.38degrees.org.uk/petitions/fair-treatment-for-m-e-patients
Further reading (I'm not the only one saying these things!):
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