The Hidden Burden of M.E.

A couple of days ago, on Severe M.E. Day, I came across this post by ‘Terry’ (pseudonym) on an M.E.-related Facebook group:

💙💜💚💙💜💚💙💜💚💙💜💚💙💜💚

I’m starting to write this at 4 o’clock in the morning. I have sleep reversal, and today, August 8th, is Severe M.E Understanding and Remembrance Day.

2 nights ago, seeking support, I posted under the title “Injured” that I had damaged my ribs, asking if anyone would be awake late, very late.
People were lovely and kind, some offering a number of solutions.

What the responses made me realise, however, is that I hadn’t done a very good job of explaining the severity of my condition generally. In fact, in crisis due to the injury, I hadn’t been able to explain anything at all.

When I joined the group, I never introduced myself and didn’t explain that I have a profoundly severe case of M.E. So, it feels a little bit like it might if one was gay and not ‘out’. Everybody’s assuming how I identify and offering solutions based on that mindset.
So, in honour of inclusivity and Severe M.E Understanding and Remembrance Day, I’m coming out, but just a little to save on your patience:

I haven’t left my home, bedroom or bed, since 1993, apart from an imposed house move, by ambulance and stretcher in 2003.
For 25 years I’ve been 100% bedbound and “bodybound” – barely able to move in the bed and only occupying two positions, either lying on my left side or propped by pillows for just long enough to eat.
At a very early point it was threatened that I would be removed from the practice list if I requested a home visit. The GPs refused to visit for 23 years “unless there was a medical need” . That is, they would come out to assess e.g a chest infection but there would be no management of my condition of severe and profound M.E.
I’ve recently actually been visited by a new GP, after the old ones retired (but only because of another acute injury) who has offered to visit me once a year. You might say ‘big deal!’ yet this one visit per year is an amazing, unprecedented and vast improvement.

I only gained access to the Internet in the spring of 2016 and find that most of the M.E groups on Facebook are solutions-orientated.
After the cumulative effects of 39 years I’m physically fragile, and exhausted beyond belief, and cannot even tolerate someone else helping. No interventions are possible.
I’m intolerant to all medication and frequently experience an inverse or idiosyncratic reaction. I’m barely able to move and can’t soak in the tub, visit a chiropractor or even apply creams designed to relieve the pain and inflammation.

Due to the severity and chronicity of my M.E I wasn’t/am not able to take any action whatsoever to alleviate or treat the extreme and acute pain caused by the injury.

The reason that I’m writing this is that, I’m sincerely glad for those who are able to follow protocols and improve their quality of life, but we need to be aware that this is not the case for everyone in the group.
There are those of us still out here for whom nothing has changed, because nothing is able to be changed.
We are invisible, ignored and sidelined and for the sake of the inclusivity of our group I’m hoping to make people living with very Severe M.E a little less invisible, once again, today.

(End of Terry’s post.)

This drastically abridged version of Terry’s situation seems to me to be eloquent evidence of:

1) how very extreme severe M.E. can be

2) the extent to which severely affected patients are – quite openly – neglected by health professionals

3) the way such patients feel they have to hide the full extent of their situation not only from people in general but even from people with M.E. who are less severely affected.

Most of us with M.E, have some experience of this feeling that we need to ‘hide away’ or ‘stay in the closet’ about our condition, usually because we can’t quite face the sheer extent of people’s ignorance about what we’re going through. In particular, we can’t face the likelihood that they’ll say something entirely inappropriate in an effort to try to be helpful and thereby trigger emotions we can ill afford the energy to experience.

How much worse must this be for those who are as severely affected as Terry, for whom the gulf of understanding is so much greater, who are even more likely to be met with jaw-dropping disbelief instead of appropriate empathy.

By and large this ignorance isn’t other people’s fault. It should be up to the health profession to inform them. But health professionals are of course the least likely to understand. They are the most likely to listen to the lies of those of their number who have built their careers on unfounded untruths about the condition. And this in turn gives them leave to neglect such patients, to ‘refuse to visit for 23 years’ as has been the case with Terry.

Also on Severe M.E. Day, the M.E. Association asked a question on its Facebook page:

If you have been severely affected by ME, or are currently severely affected, or are a carer or family member of someone severely or very severely affected, what changes would you like to see to the care that you (or the person you care for) receive from the NHS?

At the time of writing, many people have left comments or suggestions, including one from my wife Chris who has severe M.E. herself and is largely housebound but not (touch wood) bedbound for the time being. Chris wrote:

I would like to see the following charities really focus on improving things for severe ME people & lobbying NHS England for this.
The NICE guidelines do nothing for the severely affected….
I am thinking of a working collaborative of the MEA, Invest in ME, Tymes Trust, The ME Trust..working with each other & the 25% Group. (I have not included Action for ME because they are not trusted by many patients, ESPECIALLY THE SEVERELY AFFECTED owing to their close collaboration with the biopsychosocial NHS clinics & Esther Crawley).

1. to establish a dedicated flying squad of well informed, trained & compassionate health care professionals in each region of the country
2. to establish the exact numbers & a directory /database of people severely affected,
3.to visit severe ME patients WHO CANNOT TRAVEL even to any centres which are set up…
4. to provide help/ palliative care to them in their own beds at home
5. to liaise with their GPs/Social Services/carers etc

Such an initiative would not be ‘solutions-oriented’. The health professionals would not be trained to expect the patients to be up and about after a few months of encouragement. But they would be willing to assess and acknowledge the terrible situation in which so many severely affected find themselves, to allow them to be as they are without fear of blame, and to shine a light on the heavy burden such patients have had to carry, while the money which should have been spent on research to address the physical roots of their illness has been squandered instead on desperate attempts to justify exercise programmes.

If you agree with Chris’s suggestion or have some ideas of your own about what can be done to improve things for the severely affected, you can still respond on the MEA Facebook page. The post was on 8 August at 8-25 am.

Thanks to Terry for permission to repost their thoughts.

Advertisements

13 thoughts on “The Hidden Burden of M.E.

  1. NHS England’s GP committee doesn’t even see any need to provide a service to help bedbound people find GPs. I tried to explain to them how difficult it was to find a suitable GP even for a well person, but they still thought it was nothing to do with them. They just sent me a print out of all the GPs in my area, and left it to me to ring them all up, and try to arrange one. I asked them how it was that they did assign me to the ‘safety GP’ when my own GP complained I was unreasonable, and why they could not do the same at the request of patients. They had no answer. Not in their job description. So patients go through misery for want of an already set up GP committee doing what everyone would expect they actually existed to do. 😦

    Liked by 1 person

    1. From what I gather, Terry’s GPs thought they *were* providing a service as they said they would visit to treat other conditions, just not ME, the implication being that ME is not significant enough to matter. The GPs probably didn’t know any better but the prominent researchers who give credibility to this kind of misconception must surely be starting to have their doubts. How many such examples of mistreatment and neglect are they sanctioning worldwide?

      Liked by 2 people

      1. The trouble is that most GPs just think of ME/CFS as a synonym for ‘hypochondria’, and, unfortunately, this is a derogatory term which they apply to people who actually disgust them for wasting their and the NHS’ time, money, and resources. Consequently we are treated like criminals, and many NHS doctors, nurses, and staff–including psychiatrists who should know better–make no effort to conceal their contempt once they have seen what others have written in our notes.

        My own experience of this includes two people who might still be alive if they had not been consigned to psychiatric ‘care’ rather than mainstream hospitals, and I very nearly became a third myself, but was discharged just in time.

        If this neglect happened in the US prison service, it would be a crime of ‘deliberate indifference’. Here, a high proportion of NHS staff take a pride in making life hard for those who have been branded as hypochondriacs–it makes no difference what more PC epithets and acronyms are dreamt up for the perceived criminal mental illness, and there is no point in trying to explain that genuine hypochondria ought to be given the same respect as any other illness in any case. 😦

        Thus when a surgery says it will be available should any genuine illness arise, in practice, the only way you can prove you have one, is when it gets so bad that you nearly die and the hospital informs your GP.

        Many people must have died because of this NHS culture of contempt. I’ve seen it many times, and I very much doubt that they are only picking on me. 😦

        Liked by 1 person

  2. urgent topic.

    ‘Terry’ (and everybody with m.e. who is unable to leave the house without serious consequences) needs doctors, dentists, cooking, cleaning, bringing food to bedside, shopping, paperwork/snafu-fixing, phone calls, and fighting for rights. severe sufferers cannot do those.

    ===

    in many countries, services exist for diseases and elderly, but not available for m.e. or are 100% useless.

    I IMPLORE READERS TO READ THIS EYE-OPENING NYT ARTICLE: http://www.nytimes.com/1997/11/12/us/new-challenge-to-idea-that-aids-is-special.html .

    meaningful services can be made available to m.e., because they ARE available for other groups. of course, i don’t want anybody attacking hiv/aids, but supporting m.e. which needs services. in fact, i’d like to see the aids movement lend a hand to support m.e. the nyt article is not exaggerating or mis-stating the facts.

    we don’t need candle-lit dinners, but we do need m.e.-aware doctors, dentists, and services. (m.e.-aware means e.g. keeping stimulation to bare minimum.)

    ===

    in many places, including the us, if you do not have a caregiver and pay for helpers, your probability of survival is not high.

    all with m.e., including the mildest, are affected. all can become severe or worse in the blink of an eye.

    p.s. there is lack of standardization about terms like “severe”. in this comment, i mean that you are typically not able to leave the house for many years without risk of serious consequences, although you might take that risk on rare occasions for emergency reasons or forced relocation. there are worse levels. this tries to clarify: http://thekafkapandemic.blogspot.com/2013/03/three-damaging-myths-about-severity.html

    p.p.s. for health reasons this comment is not polished, but i hope you get the idea.

    Liked by 1 person

    1. The link is twenty years old and I wonder how much has changed in the meantime? It would seem to be fair and logical to treat all conditions equitably but it doesn’t to be the case unfortunately. For instance, patients with hypothyroidism get free medication (including for other conditions) all their lives but people with other chronic conditions don’t. Should we cling to consistency, I wonder, and outlaw such anomalies? Or should we grateful for the occasional accidental outbreak of compassion?

      Liked by 2 people

      1. AIDS was a different case because it is an infectious/contagious disease and the measures taken were as much to protect the general public from those who had the disease but could not afford the treatment, as they were for the benefit of the HIV infected.

        The M.E. ‘community’, and those with other non-contagious long term illnesses have no such bargaining chip, so society at large has felt no imperative to help us for their own safety. On the contrary, we have become useful scapegoats and a distraction from governments inflicting death by a million cuts to NHS services.

        In one way we are in a similar position to the AIDS community, in that, though to a much smaller extent, we also have career-providing ‘charities’ grown up around us, and the all too well known career ‘expert specialists’: both with vested interests in making sure we do not find a cure in a hurry. They’re not *all* bad, but they would nearly all be lost without us, whereas their objective ought to be to cure and disband at the earliest opportunity.

        Liked by 1 person

  3. the following is almost never stated or understood by anybody:

    – for many, leaving the house is extremely dangerous
    – therefore, doctors and dentists need to go to them
    – in some countries, cooking and cleaning is not provided

    must we point out that if you do not eat, you do not survive?

    i missed the nhs part. so my comments are off topic.

    Liked by 1 person

  4. There is a group which consists of most of those groups, forward me, chaired by countess of mar.
    I’m also very interested in advocacy and home care, supported living for me, nursing homes don’t cut it.
    The new guidelines for me, and the one for neurological conditions (see nice website) may not help us at all, but further the cause of psychiatry as the expert, and disbelief as treatment

    Liked by 1 person

    1. Yes, there is Forward ME, but they include another prominent group who a lot of us would rather not see involved in such an intiative. As Action for ME are close associates of a doctor who thinks severe ME (at least in children) is really a mental health condition called ‘pervasive refusal syndrome’, I would be very unhappy to see them involved in organising home visits.

      Liked by 1 person

  5. Steve (spamletblog) – Your last two comments don’t have ‘reply’ boxes so that’s why I’m replying down here. I’m afraid you are right about ‘hypochondria’ – or ‘illness anxiety’ as they prefer to call it these days. ‘Terry’ has just sent this PS to the post:

    “Terry asked several different GPs, on several occasions, whether a home visit once every 3 months would be possible, in order to discuss the various conditions that arise within or outwith the diagnosis of M.E The reason given to Terry for refusing to visit was: “We don’t want to medicalise your life” . What this could possibly mean was not explained and left Terry speechless with incomprehension. Please discuss!”

    I’m afraid that seems to confirm the thinking. They don’t want to offer home visits because they don’t want to ‘medicalise’ their patients, i.e. to encourage their ME patients to focus on this imaginary illness of theirs. If the GPs ignore them for long enough, maybe they’ll eventually get bored with lying in bed all the time.

    Of course there’s already plenty of evidence to rebuke such a view of ME, but there’s no incentive for doctors to take a look at it.

    No, they’re not just picking on you, Steve, nor on Terry, nor just on people with ME. As I’ve discussed before on this blog, any patient with a condition that isn’t fully recognised is likley to be treated in the same way – and the current trend towards the MUS (medically unexplained symptoms) diagnosis is only going to make things worse.

    Liked by 2 people

  6. When the practice I was in assigned me to a new doctor I tried to do exactly what Terry wanted, to make a new start and discuss the way forward. I was quite surprised that the doctor did come and introduce herself, but I got a surprise when all she did was take my blood pressure and make to leave. I tried to demand that she did me the decency of discussing my future but she refused point blank, and, when I stood in front of the door and tried to explain, she just called the police rather than listen to me.

    As it turned out, I had a decent chat with the policeman, who sympathised with the problem of being refused even to talk about medical help, but the doctor would still only talk to him: not me, so there was nothing that could be done.

    This turned out to have been a lucky break, because, once the GP practice complained to the GP Committee, they assigned me to the ‘safe doctor service’, which was the best service I’ve had, where you just left a message on an answering machine and the GP called you.

    After a year on this service I was, unfortunately, declared safe, and dumped to seek out a new GP for myself, no matter how much I pleaded with the GP committee (or whatever it’s called) to find and assign me to one, as they had shown themselves capable of doing when it suited them. They wouldn’t even let me stay with the ‘safe doctor’.

    Very luckily, through FB contacts, I did manage to find a better GP. I wouldn’t have been able to decide otherwise, as all the ones listed on the NHS site had terrible comments about how dreadful the service was, and most were far too far away to expect any home visits.

    It really is incredibly just how much there is stacked against people who are chronically sick, as opposed to just disabled/handicapped. 😦

    Liked by 2 people

      1. There’s another aspect to the GP refusal to talk to me story above, I forgot to mention:

        After the business with calling the police rather than talk to me, I tried to make an official complaint to NHS England that this GP practice had been effectively preventing me from getting access to diagnostic services for decades, by ostracising me as a hypochondriac without any evidence, and by forcing me to accept inappropriate psychiatric ‘treatments’ as a punishment for asking GPs to do their job and help me with my illness.

        I spent a long time on the phone to a case worker dealing with my complaint, as he wrote down all my points. Then he said he would send me a copy. When it arrived, it said tat my complaint was that ‘I was having difficulty obtaining access to psychiatric services’!

        I had, years before, tried to take the mental health trust and GP to court for malpractice and malicious misdiagnosis, after I just made it out of ‘rehab’ in time to have the clots on my lungs properly diagnosed. I did find one solicitor specialising in such cases locally, and she asked me to send her a brief. So I went through case law and the relevant human rights and disability Acts and Charters, and wrote what seemed a pretty strong case (the Equalities Commissioners had thought it quite reasonable). I sent it off but heard nothing more, till I got back in touch with the practise and was told that she had left, and they didn’t know where she was now, and they had also stopped doing medical negligence and legal aid work. 😦

        I got in touch with the Law Soc to ask for advice on solicitors in my area who might take such a case. They gave me two numbers, both turning out to be practises that don’t do such work. The phone call to the Law Soc cost £11: not exactly making it easy for people on benefits to get access to justice!

        I’ve also been round the full circle with all the different ‘PALS’ versions for each NHS ‘service’–they all pass you back and forth between them–and the Ombudsman–who refers you back to PALS…

        So we are routinely denied access to medical services to which we have a right, and we are effectively denied access to all the places we ought to be able to obtain legal redress. Writing to MPs is no good either, because they just write back answering completely different questions to the ones you wanted to get the MP to sort out. Usually it takes so long to get the reply, that you’ve already moved on to something else, and forgotten what they are talking about! 😦

        There simply is no accountability, and no way to bring the situation before any courts with the power to do anything about it. 😦

        Liked by 2 people

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s