I’ve not got the capacity to read through this thread at the moment so apologies if what I say has been said.
First, thank you to
@Jonathan Edwards. The ME community owes you a huge debt of gratitude for taking this on, along with all your other voluntary ME related work. If only we could get more retired doctors involved.
As someone who has has been ill since 1992 and gone from bedridden for about 7 years to mostly bedroom-bound for another 7 years to now being able to get downstairs nearly every day and outside in my wheelchair a bit, I hope my experience may be of some value.
To me the most important part of management of people with ME or any other condition is to treat them with dignity and respect. That should go without saying but it is something that the medical profession has failed to adhere to with ME. If a medical professional feels that they are being kind or generous by appearing to treat people with ME the same as they would treat patients with other similarly disabling conditions then they have already failed in their duty of care.
Although the quality of my life is less bad than it has been, I don’t know whether my underlying condition is any better or worse than it was when I was at my worst or whether I have just adapted better to it. I suspect that if a I was to return to trying live as a was before I became very severe I would quickly end up in the same state or worse than I was at my worst.
The the most import things I’ve done which I feel have helped to improve the quality of my life are accepting the need to limit myself and for disability equipment. When I was bed-ridden I would still struggle to the bathroom and back once a day to go to the loo. Now I am not bed-ridden but I use a wheelchair to do the same journey along the landing. I also have an intercom system to speak to callers and open the front door from my bedroom, a fridge and microwave next to my bedroom, a manual wheelchair on each of the three floors of my parents’ house (where I live), two stairlifts, two powered wheelchairs (one for garden, one for road level), a wheelchair accessible vehicle, £100s of pounds worth or arctic clothing for going outside in summer etc. etc. In the past I would struggle to try to walk from the car to a doctor’s room for an appointment and then be in so much pain, fatigue and discomfort afterwards that I wouldn’t be able to even read the newspaper headlines for days or weeks after. Now, I always do less than I’m able to do at any given time, I almost never push myself to my physical limit, or close to it, because, after years of obstinacy and denial, I now reluctantly accept that this ghastly, counterintuitive, sometimes humiliating and always frustrating approach is the best way to maximise my participation in social, recreational and intellectual activities, within the confines of my illness. Paradoxically, doing less enables me to do more.
It is worth noting that, despite the severity of my illness, none of these mobility aids were recommended by any medical professionals. The only advice I have ever been given about such aids was from an OT who told me – after I had been bed-bound for several years – that I shouldn’t buy a stairlift because it might diminish my motivation to walk up and down the stairs. Unless you have experienced it for yourself, I don’t think you can ever fully understand how uncomfortable it feels as a young person to have to use a stairlift in order to get up and downstairs. For a long time I would never use it in front of any visitors – I would always make sure that they were out of the way before going up or down because I felt so embarrassed to be seen using it. The idea that I would ever use this or any other mobility equipment if it was not necessary to improve the quality of my life is both preposterous and offensive.
With regard to sleep, my pattern is still quite badly effected – I go to sleep late and I wake up late. My anecdotal experience is that trying to impose a strict routine or restrict my sleep in any way has not been helpful. I find that the quality of my life is better if I accept that my time clock is skewed and that I need more sleep than healthy people. I also often find that I benefit from sleeping in the afternoon if I am able to.
I don’t know if this counts as management but I also feels that changing my diet and taking supplements seems to have helped a bit. I have also found ice-packs to be a useful way to numb the discomfort I experience, particularly in my face and at the back and side of my head.
My feeling is that with regard to the Guideline, it may be as important to emphasise what medical professionals should not do rather when they should no. Doing nothing other than listening to patients and treating them with compassion, dignity and respect, and admitting our ignorance, would be preferable to to being mistreated and given bad advice.
I also think it’s important to emphasise that different approaches may be appropriate for different patients. We don’t know whether all or most people with ME have the same illness, and even if we do it may be that different people will respond differently to different management approaches, and also that the same people may respond differently to same management approach at a different state in their illness.
In a world of infinite resources it would be great to be able test different management approaches in clinical trail but given the very limited funds available for any type of ME research I would be very disappointed to see more money going into more behaviour studies looking at the effect of regulating sleep etc. instead of going biomedical research. There is also the risk that if different illnesses are conflated the data may be uninterpretable. What if ME was two disease, one which benefits from management approach A and one which is made worse by the same approach?
I know some people will say it doesn’t have to be one or the other, but for me the priority must be biomedical research to develop diagnostic tests and effective treatments.
In writing this post it occurs to me to mention a sort of paradox which I’ve often considered but never expressed: I accept the need for objective outcome measures in unblinded trials, or least that unblinded trials with subjective outcomes are uninterpretable. However, as a patient, the most important thing to me is how well I feel. There are days when I am to get up and function at a certain level without making myself worse – say, sitting in a chair, speaking on the phone or reading the newspaper for a certain amount of time – but my level of pain and/or discomfort is such that the quality of my life is still very poor. I have often said that, despite being desperate to do more, I would rather do less if it made me feel more comfortable. In fact, as well as all the physical and mental activities that I would love to do if my health ever returns, one of the things I wish for more than anything is just to be able to sit in a chair and feel comfortable and relaxed doing nothing. If I could trade all those years in bed in terrible pain and discomfort for the same amount of time in bed feeling exhausted and drained of energy but comfortable and relaxed my life would have been infinitely more bearable. But how can one measure such things in unblinded trials? Is it impossible? And if so, is there a risk that management approaches which improve the quality of life of patients but do not effect outcomes which can be measured objectively may be overlooked?
Sorry this is a bit of a ramble. I’m not feeling well enough to write anything more succinct at the moment, but I wanted to get something down because it’s such an important issue. I hope what I’ve written may be of some use.
