What does that mean

Defining words can change with illness severity - fatigue can be anything from tired onto mental and physical paralysis, what we mean by a word will often need explanation as the meaning changes.

Resting - sitting down chatting or laying down in a darkened room with sensory deprivation, not moving or thinking at just the right temperature (neither warm or cold)

Slowly - longer time than when fit and well or weeks months if at all achievable.

Over Exerted - gone outside the energy envelope but it will be paid back in a few days or relapse in all symptoms that does not recover to previous levels.

Activity - gentle exercise Tai Chi for example or been sat up so your can be cleaned as the days only activity.

There are many more words that will have different meanings for us as individuals, defining what we mean removes some of the confusion that can occur when friends/family, doctors, social workers, benefits agencies communicate with us.

52 Replies

  • Thanks, Ian...:-)

    Wisely and meaningfully expressed, from deep experience.

    Yes, with you on these nuances, whereby a word signifies states that may actually a world apart.

  • The shades of grey between black or white answers is something that is difficult to explain, must be as much difficulty understanding when the explanation goes beyond the experiences that can be understood without actually having been there or anything remotely similar.

  • Building on these thoughts, that Ian has raised...I find myself wondering about coherent definitions, to communicate with Drs, other health professionals and care workers effectively.

    I recently found a form created by the World Health Organisation (WHO), that can be self completed or completed with a health professional in just 20 minutes, so pretty quick to work with even for those who need to chunk it down to 2 mins at a time. Its called WHODAS2 (World Health Organisation disability assessment) and can communicate in a snapshot the level of functioning as a whole.

    It can be down loaded here, after writing a brief email for permission (to state what purpose you want to use it for, whether as a clinician or as a sufferer):


    I plan to self-complete and email to my GP as an efficient way to communicate my genuine current state, which I find not so easy to portray in a 10 min phone appointment.

    Wondering if anyone else has used this or discovered or invented other similar ways to communicate current levels of energy and functioning?

    By the way- to go a bit off-piste for a mo - for those of us in the UK- I notice that the PIPs form actually seems to be based on the same concept, of the WHODAS questions, however formulated in a far less nuanced way, and also way more labour-intensive and energy consuming process (I guess because its not concerned with assessing whether someone has a disability or not, but because of the financial commitments involved...However, perhaps a subject for a different day.)

    Meanwhile, back at the ranch on the question of meaning and communication... I've also chanced upon Dr Lerner's energy assessment form, in a simple scale from 0 to 10, where 0 is bedbound, 1 is up 30-60 minutes etc, which has the advantage of being a quick way to define an overview.

    (Speaking personally, on that scale, I'm 0-1 at present, but I'm aware that within '0' there would also be room for finer nuancing, for example for those who are being tube fed, living permanently in a darkened room, and perhaps the scale could be nuanced eg 0.1....0.9....)

    Thanks for reading, hoping this relates to some of your experience too.

    Kindest wishes, everyone,

    RockRose :-)

  • A nuance in numbers say as they do on the pain scale of zero to ten where is the pain at. Now personally the reply has moved on with years going by can't help thinking the same happens on the words. A six on pain have all that say that number got as much experiences is meaning the same between any two people. WHODAS2 function thinking how can they tell when mine moves that next week ask again meaning moved on somedays can change hour by hour function meaning.

  • Ah yes, Seascape, understand the moving fine nuances of the fluctuating experience...how to conjure and express...

    and as you and Ian rightly convey. Feels so fine and varied...yes, hard to put a finger on...

    Even so perhaps helpful communicating the range...so others may learn to comprehend...when we need or want their help and support?

    (For me the WHODAS2 helps a bit, because it gives a fairly realistic overview of (my or any of our) functioning...and feels useful that its answers are nuanced across a range of whether (generally) something can be done easily, moderately, with severe or extreme difficulty...and yes, there are further fluctuations...Feels like delineating a jelly fish sometimes :-)

    Wondering how else we may possibly convey an approximation of the experience somehow...

    Wondering if one possibility is with answers that represent the range of 'bettter days' and 'less good days' ?

    Appreciate your sharing and thoughts, thanks Seascape, and all kindest wishes :-)

  • From what I am hearing the percentage of good days is considered at PIP assessment where what we mean by good day will need some detail adding for a clearer definition of use.

    On a similar line the ability of walking will be considered consistent without describing payback (PEM) less good days that make what a term describes for each individual.

  • Bottling sea mist RockRose grab a handful nooooo. Fill out questionnaire recover from thinking try again same noooo.

    So clever a machine that tells me how I am sends me back into bed a phone app for ME must be here soon.

  • Sea mist so subtle-beautiful Seascape...

    The rest already expressed so clearly...

    Essence and presence to be felt...

    Leaving the paradox

  • Essence and presence to be felt ..... Yes a dull headache a lurking presence striking ferociously from the shadows defenceless in darkness a presence felt.

  • I can only respond with every genuine empathy, Seascape...and that feels horribly painful, so

    I honour the experience of sheer, honest suffering, so strongly voiced in just a few words...

    Such courageous enduring, genuinely calls for any moments of relief that may come, and truly wishing so whenever humanly possible

    And gently blow to the winds any of my words that may not chime, through these ethers,

    And in spirit of gentle kindness and honour,


  • Thank you from the bottom of my heart RockRose chimes across these ethers with empathy of a fellow sufferer. Sleep almost upon me once more I must depart my pain dulled xx

  • Thank you also, Seascape, so touched by such felt-heart and the chime of recognition of a fellow-sufferer across the ethers. Sleep soundly xx

  • Sleep one word at three this morning "what does this mean" happens after pain overcome broken up when pain returns.

  • Sleep was the first symptom that I wanted some control of, the idea was that everything else would improve if non refreshing sleep was ended.

  • Sleep broken up over three days ends drained out completely before around again. Controls beyond reach attempted many nature path remedies.

  • Feeling poignancy of pain diminished then returning, so vividly...and heart cries from the deep...and then the sometimes balm of sleep, yet mostly unknown...sometimes a grimaced enduring...and in welcome moments, , a quiet gentling soothing.... As underwater creatures, rarities...

  • There is a smart phone application Seascape although awaiting development until so clever.

    A diary that keeps a record mecfsdiary.com/ which can be useful for benefit or treatment purposes with snapshot selfies.

  • Yesterday starting an in-depth health and social care assessment, refreshing to receive a willingness to explore what's needed and supports, even though the social worker admits she doesn't have experience of any others on the books with this condition, which feels curious...though yes, she volunteered that she had heard of the controversy around this condition due to beliefs...then surprised me saying 'clearly 'you're very unwell and this is a slow process' (which also brings relief through acknowledgement, free of the more usual push of expectation). And whilst just a beginning, with all the unknowns, I would sincerely wish for us all and others around the world such honouring.)

    And how the human factor helped, through presence of a devoted friend who understands, who could get across the message of severity in 2 sentences, when I might have been so gentle, (then risking the message missed...)

    And the social worker's face speaking volumes as understanding registered...

    Feeling a tremendous change not to need to create dairies and evidence on this occasion, whilst still needing to do so for PIPs reconsideration, in process of enlisting GPs report, will see if helps a little...

  • Someone listening is a great positive, willing to explore using your experience/input is a bonus.

    Hope you can find answers for care needs between you during this process.

  • Thanks Ian, for thoughtful, kind support, beautifully spoken and much appreciated. Truly a positive of someone listening snd exploring, yes.

  • My phone holds alarm calls for times and dates a diary round up has promise. Almost drifted away on Oxidative Stress any distraction been fatal.

    Thanks for sharing.

  • First heard of that app at an ME conference I did not have a phone that could run it at the time.

    I have no experience of using the app only shared that technology could be closer than we think in helping cope.

  • I am using a heart rate monitor app my hearts "irregular" more information on how my body is on bad days a stop now warning !

  • I would be a 1 I think, on that scale. I have seen the WHO one and think it is good. I plan to try to get something like this organised if I manage to get a doctor who will care to know.

    So far, I tend to come across as overly verbose and that translates to many people as a complainer, overly sensitive and overly focused on my symptoms, which can mean that I'm psychologically creating or enhancing them... etc.

    I am not sure how to present accurate information in a form that will be clearly perceived and strong enough to communicate the degree of illness, disability, limitation, and pain I feel.

    If someone has a good rule of thumb, please let me know. You know when the eyes glaze over and they start to write a prescription and hand it to you to get you to leave? Well, that tends to happen to me, in some form or other, when I deal with medical people.

    Alternatively, they perceive me as someone who needs placating, and they try to listen, smile and nod, assuring me that they want to help, that they know I am suffering. Then they say there is nothing more they can do, or just leave, if they are in my home.

    When I made myself absolutely clear about what I feel I need, what I want, and why.. plus what I don't want... well obviously I went too far, because I was invited to find another surgery.

    I made it clear that I do not want large amounts of their time, but I do want them to spend a little bit of time to read up on what the foremost experts and researchers have to say about this illness. I made it clear that I do not want to be placated or dismissed, and that if they indeed think that this is a psychologically based illness, I want to be told that directly.

    I also made it clear that I don't intend to agree to treatments which are based upon psychological and psychiatric theories which contradict biomedical evidence.

    Was I too direct for my own good?

  • Little then rest pacing with doctors all at once is more than they can do.

    Pick targets then negotiate the best deal a frustrating prospect I know but time is of the essence.

    Go again budgiefriend tomorrow is a fresh day

  • Just lost my longer post alas, but this thoughtful post of Ian's got me thinking about how we may communicate effectively and efficiently with Drs, other health professionals, social workers and employers.

    Has anyone come across the quick to complete WHODAS2 form (World Health Organisation disability assessment scale)?

    It can be downloaded here on request - I plan to do so for my next med review, as I think it gets over the degree and level of functioning far more easily, in a snapshot, than my fumbling words can express in a 10 min phone appointment:


    I've also recently come across Dr Lerner's energy scale (available on his website), that allows for an at a glance summary, using a scale from 0-10, where 0 is bedridden and 10 high functioning. Of course it could be more finely nuanced (as within '0' would include those bedridden, tube fed, living in a darkened room and others like myself with more capacity yet still very limited....so could be refined as 0.1...0.7...etc).

    I wonder what you think and experience? Has anyone here discovered or invented other ways to communicate the true living reality of this experience?

    Thanks for reading.

    Kindest wishes, RockRose :-)

  • I can talk here and you understand I feel I am talking about life on the moon with doctors the word I want is understanding.

  • When you write here dear Slowmotion I feel your presence in few yet so genuine words that touch the heart...and yes, feeling the most natural yearning in the world to want understanding from the doctors...who vary so much in attitude...

    And gently wondering, is there anything that would support you more, that we could gently explore together in our community In coming days?

    This comes for you this evening with kindest and warm wishes for you (and all of us) enduring...

    :-) x

  • Does anyone find the family can ignore bad days that aren't convenient. All going for a meal at a restaurant come along staying home spoils everyone s night make the effort.

    Pressured into a smile and I'm ok when home under a duvets all I want with quiet all too much to ask for.

  • Understanding and recognising something of what you share with us Slowmotion; feeling the yearning to be in quiet, to feel understood by family and/or/also those closest to us.

    Encouraging holding-firm to the real needs and wishes, in-tune with inner listening. only you or we may know our body's needs...

    So holding this the most valuable, beyond the outward pulls and splashes of others' emotions.

    Feeling it a journey to convey the genuine need, to voice steadily, consistently, including saying a kind yet firm 'no thanks, another time'

    In my case... Last year when still mobile and able, attending a family event for 1 hour. They wanted more, yet I knew to minimise payback this was the most wise. In last 5 months knowing not a possibility, finding that saying no earliest diminishes anxiety (of letting others down), helps more genuine rest and attentiveness. Does this feel any familiar to you, I wonder?

    In quiet gentleness :-)

  • Personally diagnosis was as much understanding as I hoped for from the medical profession, that could be seen as harsh as some work well with limited resources. My self defence after initial misunderstandings was give most credence on useful opinion which I found most often amongst those with similar experience.

    Understanding will resonate with many of us through experience of looking for answers that we did not get, left in limbo neither fit nor treated for an illness an isolating position between worlds.

    Heartened members feel understood when the written word makes the subtle nuances of the spoken word harder to convey as we would wish.

  • Find some peace in understanding maybe strange not explaining or justifying every little thing makes me less anxious.

    Just dont get me started about doctors misunderstanding LOL

  • Very thought provoking.


  • Possible that as we adjust with circumstances we adjust the meaning of words, could also be interesting asking ourselves what we mean by some words answering some of these could inform how we see our situation.

    Once we have that straight in our own minds informing others can be simplified, provided they are listening.

  • Yes, feels a wise way, Ian, gently and gradually...

    Thanks for all the thought-provoking sharing on this post :-)

  • The opportunity of discussing what a word means for each of us makes me take a fresh look at my own situation, taking a little time reflecting on how I am against six months ago.

  • Ah, yes, feels wise perhaps for each of us, taking a fresh look after 6 months...and reflecting...and Ian, if (and only if) you wish and care to say, wondering how your own situation is faring, ...and whether discovering or noticing any helpful observations perhaps?

    Hoping and trusting that emerging Spring and sunshine brings welcome green shoots wherever humanly possible :-)

  • Some sunshine is welcome cold damp stiffens Arthritis the springtime is a time of beginning to function after a winters hibernation. Cold sores and hives say that moving from winter maintenance onto as much as possible is outside my energy envelope.

    Sore throat has got that the power of speech is gone, time for total sensory deprivation rest with tomorrow another day that could be a better day after some payback. On all the medication available..... greased up with an eczema flare another warning that must be settled before any progress, reminds me of playing snakes and ladders as a child, just slid down need some luck for a ladder that will climb up once more.

    Take a long view that going into another winter after doing all that was possible really is the best, in a long run thats carried out over years a few weeks/months lost are only a small price.

  • Feeling such noticing and wise observation dear Ian, in such authentically-voiced reply (voicing even when throat so sore and all the domains that ache...)

    And so appreciate the sharing and distilling, actually feeling how important, to focus like that, feeling the long horizon and the individual moments...noticing the patterns...

    bringing such fine, discerning, realising when moments are ripe to stay steady, draw back or gently expand the energy envelope...

    Feeling respect for the cherishing and taking care of your good self, in so many dimensions....Yes, recognising the 'Snakes and Ladders' too...

    And perhaps one way of seeing, as a vessel at sea, noticing the sails of each of our own selves here, in seasons, tides and waters...navigating as possible, or dropping anchor on a dark and quiet shore of rest, repair...

    balancing the call and impetus of life and living, with an inner awareness...so sensitive...

    Caring for the whole vessel, repairing where can be...Maybe holding a 'kind' of acceptance, whilst keeping open horizons for crests of new waves...for cues to well-being...

    And for you, Ian...and all of us here wishing you arriving in warmth in coming months and warmer days, for some easing when humanly feasible

    With respect and honour and warmest wishes


  • Vertigo feeling all at sea does not happen so often one of the rarer symptoms that drops anchor.

    Keep as well as you can RockRose :-)

  • Thank you so much Ian, including maritime analogy - really appreciate...and yes, as you say about that rarer symptom dropping anchor...Likewise keep as well as you can Ian

    (from one who's enjoyed sailing around the Western Isles once...marvelling at the pristine air , the ancient rocks and sightings of whales and seals...trusting this mention is ok,

  • When fit and well I visited the western isles.A memory that sticks was asking if they were going shopping, yes with no mention of when as time was of no account.

  • Oh Ian, appreciating that memory shared.

    Perhaps a place where tide rather than time prevails...

    Something about relaxed free space...whilst also recognising true moments when time is of the essence; both playing their part...

  • Ian, your symptoms sound more varied and worse than mine for sure.

    My skin irritations and eczema are more limited to small usual areas such as inside my ears and around my hairline, and much less severe. When I am really pushing beyond my limits (in the past, mainly) I got it over larger areas of my face, on my arms, etc. and it was really difficult to get rid of.

    Now I use some good quality oil shampoo or cream/oil applied when it gets bad, and although it never totally goes away, it does improve to the point that I rarely worry about dealing with it.

    I have had some throat symptoms, including sudden constriction and spasm when swallowing, soreness, swelling, etc. but those have been very infrequent. They lasted for a period of weeks, and even not constant during that time. They seem to have become an issue when I was very stressed and having to exert beyond my limit.

    My orthostatic intolerance has become worse and worse, and my chest pains (angina, I think) have changed from happening only with major exertion to mild exertion, and now happening periodically when I am at rest.

    My pattern of pulse rate with blood oxygen level shows that there are extreme changes when I exert or when I stand still.

    My pulse rises but over the longer term, cannot result in oxygen level improvement for more than a minute or two at most.

    There is a constant rise of extreme nature, and lots of fluctuation in my pulse rate even over 30 seconds.

    Resting typical blood oxygen is 89 or 90 percent usually, and occasionally when I feel a bit better it is as high as steady 91-92.

    You discuss more problems with illnesses than I have, but that may be due in part, I think, to my extreme isolation. I don't know whether you are totally isolated, but the only people I ever even see are my carer and delivery people, occasionally a social worker or someone like that. These typically stay at a distance from me.

    My carers do not come if they are ill. They use hand sanitiser and gloves. I have them wash my dishes in hot water with washing up liquid plus vinegar and rinse in hot water.

    I wash my hands many times a day... basically whenever I get up, and always before eating or after being around my bird or his cage.

    I am sure that all of you do these same things, but I believe it's difficult to know whether my limited exposure to outside germs and viruses is due to my limited exposure, or due to a difference in how this illness affects me.

    I do have sensitivity to bright light, or even normal daylight if I am in a lot of pain and very fatigued. But I don't require a darkened room, and almost always have at least a hall light and small lamp on unless I am sleeping.

    My fatigue, orthostatic intolerance, and pain, are the primary and extremely disabling features of the illness for me. Cognitive issues are problematic and frustrating, but I think I am quite adaptable and have developed a lot of coping mechanisms, being verbally/mentally quite agile and having good typing skills coupled with google always available.

    For me cognitive ability is drastically reduced compared to what it once was. I have learned to find a quick detour from a sentence I can't finish or a word I can't remember. This disguises the fact that my brain is working in a way that to me feels like the movement of rusty gears, frantic grasping at any available word or syllable that pops up, and finding a way to use that instead of what I want to say... etc.

    I am also a person who feels no embarrassment in saying, "I'm sorry, I can't remember this word, although I know what it is." or "I don't know." This can also disguise the internal frantic searching for something I mean to say which may be very important for me to convey. When I say this, I find often the listener just forgets about it and assumes that it wasn't important.

    When I start to stutter or stammer or slur my words, to me it seems extreme, but others seem to adapt, and I find that it doesn't last long enough or happen often enough to be important in their assessment, because I know how to pause and wait, or how to say something that comes to mind instead of allowing myself to stammer over a different word. Also the verbal problems don't happen unless I am over exerting or during acute PEM phase.

    When one is well educated accustomed to performing/public speaking/teaching under pressure, this can really be a liability. People compare you with someone who does not have those skills and experience and conclude that your cognitive function is normal.

    Normal should be reinterpreted as compared with what you formerly experienced, instead of with an 'average'. Not taking into account ones intelligence and education, former career, really makes me angry.

    I find I cannot deal with people who assume this. Just like the results of those blood tests.... "you are normal... in fact, the result is much better than average"

    It's annoying to me that my carers have rarely been present during episodes of prolonged semi-paralysis, shaking, jerking, stammering, confusion, etc. They have only arrived finding me collapsed or experienced me collapsing on two occasions in the last 2 years. This is because they are only here for brief periods, I am usually lying down when they are here and they are usually not in the same room with me, but in the kitchen or bathroom.

    I have a 4-wheel trolley that I use for support and steadying when I walk. My gait varies considerably as well as my speed. But, with the trolley, the variations are not pronounced enough to be observed in one brief trip from my bed to another room.

    If someone were to observe me over a few days or weeks time, on a regular basis, and actually watch my movement, it would be quite obvious.

    Even getting out of bed is an event seldom witnessed by anyone else.

    Do you have ideas for ways we can convey this information without going on and on, without appearing to be hypochondriacs or excessively monitoring our every slight change in symptoms, and with medical professionals who are not even accustomed to discussing blood oxygen levels, for example?

    I appreciate every post that you all make here. They are incredibly important! Bless you all!

  • Just want you to know I'm very much 'with you' BudgieFriend, in lots of what you share and the immense frustration (and righteous anger) at being compared to 'average' rather than y/our own natural capacities when previously well. Will reflect more on your questions and sharing, for a new day, but very struck by the impact of the orthostatic intolerance...plus the inflammation that seems not to have been addressed (and actually ignored), which may be behind some of the cognitive effects. I find your sharing so clear and articulate (knowing and realising the adept adaptations !)

    Perhaps could be worth 'doctoring' that very 'report' for a doctor's eyes? It's good how you express it, also saying what bothers you uppermost.

    I'm just applying for a PIPs mandatory reconsideration - one of the issues being a confusion on the decision-maker's part between intellect and cognitive effects. Ouf ! Yes, frustrating. Needing to find the words, to save going to Tribunal...

    Thanks to you and all our companions here for mutual encouragement.

    And warmly for all moments...and for sustaining.

  • I got great help with my application for DLA and reconsideration with request to increase the rates, from the ME Association local benefits advisor who came to my home. I'd advise you check to see if they are able to help you make yourself clear for the assessment person, and also to write on your behalf, as it seems that someone like that will be more likely to be considered authoritative than we ourselves. (rolls eyes)

    Also, most beneficial site I've found with regard to benefits matters has been Benefits and Work. Much of their stuff is available without membership. Membership costs around £19 per year, i think, but i believe that the FibroAction site here at Health Unlocked have their documents available as they are a member. I hope this is accurate informatioin. Their guides as well as frequent updates on news and changes in the system are invaluable and thorough.

    I wish you all the best.

  • Thank you, again! You are so supportive that it does give the rest of us much encouragement and emotional support!

  • I have made a very concentrated effort to be as exact as possible in describing what I experience, i.e. extreme pressure, a frequent feeling that I cannot move my body except my hands--I can will it with all my might, but my body does not respond; when standing for more than a few minutes or sooner while feeling extreme fatigue, I experience a loss of ability to think for example unable to remember how to make a cup of tea and fumbling to fine the milk or forgetting what I want when I open the fridge to get the milk, etc. plus feeling dizzy or queasy, tinitus increases like loud electric buzzing, I feel an urgent need to lie down which I try to delay by shifting position, leaning most of my body weight on the kitchen cupboards or even propping myself up by elbows on worktop while leaning.

    You get the idea. I have been asked by the doctor what I mean when I use terms or tell them a symptom. However, when I use exact descriptions such as those above, telling them the exact feeling and location of new type of headaches, or the cycle of constipation and loose stools....

    in reply to their question "What do you mean?" their eyes glaze over and they stop me mid sentence to quickly wrap it up and try to end the discussion by telling me the test results (those same basic blood tests taking a year ago) were normal. They fail to mention the high inflammation shown.

    This makes me feel they never intended to do a thorough assessment and were only indulging me in order to appear clinically competent. This might work with someone of sub-normal intelligence, or even with someone of normal intelligence who has a high degree of deference and submissiveness. With me it increases my frustration, distrust and cynicism.

    I then find communicating very difficult, as I constantly try to remind myself to be polite, but also to stop myself believing they know what they are doing in cases when they don't or when they have absolutely no information about what is going on with me, and don't want any.

    Negotiating this balancing act inside myself while stressed from the exertion of the meeting with the doctor and while trying to adapt cognitively to that at the same time as listening and evaluating what I am being told... well, it's quite exhausting.

  • Presenting a problem pausing while it registers then proposing your preferred remedy is an aid for the doctor speeding a patient out of the door in under 10 mins. Imagine walking in informing them the room is on fire then proffering a fire extinguisher be surprised should it not be grabbed with alacrity.

    Tiring at delivery much preparation can be carried prior to execution of the preferred remedies introduction.

  • Normally a word now I forget how normal is how should I be normally many years are gone since I knew that.

    I thought normal I am not young now this reason for how I feel when I have not been old before now is this normal only my doctor tells me no I can help with more normal.

  • BudgieFriend, wow, I feel so much insight in you...sometimes I feel there really are gaps in perception and depth, in how far any GP may care to venture in the realms of a ten minute appointment...

    Curiously, I was in discussion around this very subject with someone earlier...and I feel we could open a whole post on 'making the most of our GPs and how to make them part of your team'- what do you think?

    I'd like to share my learning so far (as still learning and reflecting on how to help create the best relationship with my GP)

    Here's what I do at the moment:

    a) I make phone appointments in advance, as bedbound.

    b) A few days before, I email the Dr, sharing key points I'd like us to cover.

    I share any (genuine) positives (if there are any) as well as my requests. All on one side of A4, so the Dr can absorb it quickly and easily.

    I set aside a few days to write that note the week before, unless consulting on something clear and easy to say in the appointment).

    c) I use the word 'we' as much as 'me' to encourage the GP and myself to think more like a team and to demonstrate my willingness for team-working too.

    A recent example went something like: "I'm concerned by repeated viral flare-ups, how can we address these? Could there be a possibility to look at anti-virals, ref. Dr Lerner Et al"

    (This actually resulted in me being given horse pill antibiotics, so I said, "ah, thanks, this will help us test whether this is viral or bacterial" - so I leave the thread open to come back to the viral question later...

    Meanwhile the GP can help with some things, if they know the issue. For myself, I realised only recently that they didn't know about my pain levels (I thought they knew because the CFS clinic knew, however turned-out not to be that well 'joined up'), but as soon as the GP knew, she was eager to help.

    d) I sort of notice that GPs prefer addressing 1-3 things at a time. For a deeper consultation, I book a double appointment, now and then.

    e) Dear BudgieFriend, if you do find a suitable Dr, might it be worth taking your new advocate with you to chip in and for moral support? I gather you can also (if you wish) give the advocate permission to book an appointment to see your Dr on your behalf, (on their own), if you want that on occasions when the visit itself might prove too much (if so, just provide a written permission).

    Ah, I think the kind of Dr you would like BudgieFriend, may not yet exist in our C 21st medical model, because s/he would need to be in a system that allows richer, deeper engagement and relationship, where the Dr would also need to be an expert scientist and pioneer, with a deep vocation for healing, who would profoundly understand each patient...who we are and what truly supports our evolution and deepest well-being.

    And given that 'we are where we are' with the system we have, would it maybe help to consider what we can ask from and create with a good GP? And also to be clear what may lie outside their scope, that we may need to resource or create in some other way? So we voice wants and needs where they may feel most heard and responded-to, perhaps...

    All first thoughts, on the hoof this eve dear BudgieFriend, lying in a golden pool of evening sun...

    Interested in what you think, to explore by and by...

    Gentle hug

  • Thank you for those, RockRose! I benefit from every post anyone here makes.

    I have tried some of those suggestions, although not all.

    As for taking someone with me, I have lost my support worker, but that may not be a bad thing, as during the last few months she visited me fortnightly, she revealed more and more clearly that she would stand with the doctors who believe this is a mainly psychological problem, and that she had absolutely no interest in learning about it from a bio-medical point of view but expected me to follow the prevailing protocols and go to the local rheumatologist, take their advice, etc. She really got quite rude when I said I would not accept assessment or treatment from a doctor who does not assess and treat according to bio-medical evidence rather than from a psychiatric theory.

    My current carer, although very committed to helping me and advocating for me, has a difficult time understanding some of the basics, and she has a rather loose way of searching and apprehending medical information. She does try and she reads a lot. Unfortunately, I think that what she reads is not sifted according to what is most scientifically based, etc.

    Nevertheless, I will pay her to make and attend any medical appointment or other assessment with me, because she can take notes, listen to what is said and try to remember it, remind me of things, and corroborate my statements with her own observations. I think this is extremely useful.

    I am still quite unsure how to begin with a new doctor--how much to say, how many things to link together, etc.

    Dr. Byron Hyde's writing on how to diagnose and assess is so extremely complete and complex, to the point of taking a patient out to lunch, observing them while having hospital tests, discussing all tests with the radiologist or other technician and informing the technician of the pathology so they can know what to look for when reading the tests..... I can't think of any doctor at all who would be able to do these things, or even one who would want to do them. This is frustrating.

    Dr. Hyde talks extensively in one document I read, about how modern medicine has decimated the possibilities for proper diagnosis and evaluation of patients. I find his writings enlightening but very discouraging when I come back to the reality. A wealthy patient has options that are completely impossible--every one of them completely impossible, to someone who is alone and peniless.

    I am currently working on giving my carer a concise list of the issues I would like the new doctor to address first. Although, I am not confident that prioritising in that way even does myself justice, because everything is so connected and I will be unable to show in a detailed way how all this works.

    I am also going to complete that IOM form you reminded me of and a couple of others that indicate range of symptoms and severity of symptoms. It seems that any presentation to a new physician, to be fair to us would use this three-pronged approach of 1. function as compared with previous function, 2. list of symptoms, including some brief examples and descriptions (sigh... this will be too long for a 10 minute or even 20 min appointment, so will have to be sent to the GP by email and require them to actually read it!) 3. realistic evaluation of pain and fatigue and cognitive function levels over a 2 week period, for example.

    Now I can't help wondering if there are any doctors in a 2 mile radius (their usual 'catchment area' and most will not accept patients outside it) who want to accept a mostly bed bound patient age 62 with a long list of symptoms, a diagnosis that is already firm of Fibromyalgia, and a complex, multi-system chronic illness which they probably have already been influenced to believe is mostly of their own making, whether due to psychological problems or lifestyle choices, who is already taking maximum doses of Pregabalin.

    Well, we shall see.

You may also like...