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Looking for Ideas to Improve Primary Care of ME/CFS - Health Foundation Project

Discussion in 'General ME/CFS News' started by Keith Geraghty, May 7, 2016.

  1. Keith Geraghty

    Keith Geraghty Senior Member

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    Dear Phoenix Rising members,

    The Health Foundation has a call for projects exploring innovations in primary care that benefit patients - particuarly in primary care. I am a researcher based at the University of Manchester Centre for Primary Care. I would be happy to look at running a project exploring innovations to improve the care of patients with ME/CFS in the community.

    I am looking for ideas - thus if you have any suggestions about how you think care might be improved, please get in contact with me, either post your suggestion below on this site, or you can contact me directly via my email address.

    Given evidence that ME/CFS patients report poor doctor-patient encounters, particularly with GPs, I thought it might be useful to look at ways of improving the situation for patients. For instance, if patients are fatigued - could GP practices be made aware in advance in order to shorten in clinic waiting for patients in ME/CFS; if patients have sensory overload, could GPs accommodate this by booking appointments at quiet times or reducing lighting and noise to a minimum. It may not be possible to ask GPs to do more home visits, as this may be a constraint - however are there ways for GPs to use email, skype and other technologies to communicate with ME/CFS patients? This is some of the ideas I have come up with so far - however I would like to put it to the Phoenix Rising community for your ideas.

    There is no guarantee of funding - however a good idea may stand a good chance getting funded.

    I look forward to your suggestions.

    regards

    Keith

    email: keith.geraghty@manchester.ac.uk
     
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  2. A.B.

    A.B. Senior Member

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    I doubt that doctor patient relationships are poor due to clinic waiting times, excessive noise in the waiting room, or the like. It's because there is a large difference between the way the average doctors sees the illness versus what the patient experiences. I suspect there's also an aspect of doctors feeling uncomfortable making a diagnosis where there is no treatment, diagnostic test, and substantial uncertainty in general. It's a difficult situation with no good answers but there has to be some way to handle it better.

    Doctors should not be afraid to make the diagnosis. They should not belittle patients for having an illness that is poorly understood. Even if there is no treatment, there may still be treatment options for certain symptoms. Doctors can help patients by acknowleding the illness (denying the illness is a sure way to alienate the patient).

    The problem is probably in part due doctors being poorly informed, or misinformed on the topic. Better educational material, or perhaps just distributing copies of The biological challenge of myalgic encephalomyelitis/chronic fatigue syndrome: a solvable problem and the IOM report will certainly help.
     
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  3. Keith Geraghty

    Keith Geraghty Senior Member

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    A.B. thank you for your comment. I am interested in both educating GPs and primary care staff about the specific needs of ME/CFS patients - but also empowering ME/CFS patients to make requests of the primary care team. For instance, patients may see their GP for various reasons, not just ME/CFS related issues - however given some patients may be suffering from profound fatigue it would be good for GP practices to consider this and accommodate patients' needs in terms of not keeping patients wating in the waiting area too long - booking appointments at less busy times - taking patients specific symptoms into account.

    Ofcourse doctors and health staff should address the illness as best they can within guidelines - and we can all debate the pros an cons of those guidelines - but there is an opportunity here to do research to imrpove patients' care.

    I am looking for suggestions - of types of innovations that a team of researchers at Manchester might be able to research and promote.
     
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  4. Mary

    Mary Senior Member

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    @Keith Geraghty - I'm with @A.B. - "poor doctor-patient encounters" from my experience and thousands of others are primarily due to ignorance and misinformation about ME/CFS on the part of doctors. Imagine you go to doctor after doctor for strep throat and doctor after doctor looks at you like you're nuts. Your throat is very sore, you know you're sick, you feel horrible, but instead the doctors want you to exercise or go see a shrink. How would you fix that poor "encounter"? shorter waiting times so you can be belittled and mistreated again?

    Please excuse my sarcasm but that is in essence how we are treated. Only unfortunately people with ME/CFS are much much sicker than someone with strep throat. If doesn't matter if we get in to see the doctor in 5 minutes or an hour if we are not treated with respect, if doctors are ignorant and are told to prescribe dangerous treatments like GET and plain useless treatments like CBT.

    Here are some links you might find useful:
    http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1160598
    https://www.nih.gov/news-events/new...ic-encephalomyelitis/chronic-fatigue-syndrome
    http://www.nationalacademies.org/hmd/reports/2015/me-cfs.aspx

    The last link has an ME/CFS Clinicians Guide which I think would be most helpful if you truly want to help patient-doctor encounters. The point is we can't all debate the pros and cons of these guidelines, when willful ignorance seems to be the norm for so many in the medical profession - a refusal to look at the science and research (particularly the unprecedented results of the 2-day CPET when performed on ME/CFS patients) and instead proceed blindly with preconceived notions about "sickness beliefs" - it boggles the mind.
     
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  5. Bob

    Bob

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    My new doctor provides telephone consultations on any day during the week. I just have to phone in the morning and a doctor will return the call later the same day or the next day. If I want to speak to my specific doctor then I have to book a few days in advance. On the odd occasion that I need to actually physically see the doctor (it's only happened once) then they are very willing to make a house call. Also, they have nurses who visit homebound patients if you need e.g. blood samples taken. It's a tremendous service and makes my life very easy. It's the most efficiently run, and pleasant, doctors surgery I've ever used. If I need a prescription, it's sent electronically from the doctor to the pharmacy who deliver if for free the next day. So I can phone the doctor in the morning, and get a prescription delivered the next day, without stepping outside my home. It's incredibly efficient, and I think this is the sort of thing that homebound/bedbound patients need to make their lives easier. (As well as needing a generally good attitude from the service providers!)
     
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  6. justy

    justy Donate Advocate Demonstrate

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    We all need this! I am house/ bed bound and have been refused home visits for years. The Dr is happy to talk to me on the phone, but that means I never get checked over or seen in person.

    Also as a person with severe ME I should have a care plan with my GP - this would be great for everyone with ME. I don't have one and the care is awful. Patients who are severely affected should be entitled to nurse visits to take blood also. SKYPE appts might be good. We have MS nurses - why cant we have ME nburses! My GP has been aware that ive been severely ill for 7 years, but no one signposted me to further services - I didn't even know there was a voluntary car scheme that would take me to see the Dr. I self refered to social services and after 7 years have been deemed as having a care need - I didn't know I was entitled to help and the GP should be the first port of call for this.
     
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  7. mfairma

    mfairma Senior Member

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    I'd like not to be belittled when I go see doctors. If I didn't get belittled, I might have gotten diagnosed more quickly and not declined so significantly, I might have been able to find a primary care doctor, I might have been able to get a disabled parking permit when I was so sick that I was not able to leave my house for weeks on end, I might have learned more about the nature of my blurry vision (instead of being chastised, by a neuroopthomologist no less, that my illness must be due to undiagnosed celiac), I might have gone to the doctor more quickly when my heart palpitations became more frequent and learned sooner that I need minor heart surgery, or might not have had so much aggressively negative experience with doctors that I should probably see a therapist for it (but, oh, how that would go, I can just imagine!).

    As others already noted, the problem with how this disease is managed by doctors isn't the nuances of care that concern patients with other diseases, though there are many, many of those to be addressed -- why, for example, did Social Security require an in-person, court-style interview to prove that I was terribly sick, yet not allow me to lay down in the hours of waiting before I was called in? -- but the absolute basics. This isn't about wheelchair ramps and convenient appointments, it's about getting even reasonably competent care, which isn't something most doctors are equipped or inclined to offer. It is laughable to think that any of the former matters, when the latter isn't delivered, though perhaps it would be an improvement to be conveniently belittled, instead of inconveniently.

    In addition to the sources already linked, a good start on the basics, for someone in the British system, starts with Rebecca Goldin's recent article on the US Sense About Statistics website, which is based heavily on the work of journalist David Tuller: http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/
     
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  8. meandthecat

    meandthecat Senior Member

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    This the starting point and will be a generational change when doctors break free from the prejudice that exists now. What is lacking is not treatments but the will to employ them.
     
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  9. Kati

    Kati Patient in training

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    The problem we are facing is the prejudiced ones teach the younger ones. It perpetuates the prejudice and horrible treatment.
     
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  10. meandthecat

    meandthecat Senior Member

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    Love it. Perhaps we should have an ME friendly. logo
     
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  11. Mel9

    Mel9 Senior Member

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    Skype meetings are much easier for the patient for 'in between' consulations.
     
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  12. Denise

    Denise Senior Member

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    It infuriates me that we have to go through this stuff.

    We met with a PCP who didn't want to sign-off on the renewal for disabled parking tags because "it was a crutch". "Crutch" my (fill in the blank)! It's the only way many patients can get to a healthcare professional and the only way we can have a semblance of the energy resources needed to attend a social event. (Or is attending a social event something disabled people aren't supposed to do?)

    edit to add - I meant to ask @mfairma if you have had the surgery and if so what the outcome has been.
     
    Last edited: May 7, 2016
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  13. jodie100

    jodie100

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    I think some GPs do not understand the difference between hypochondriasis, malingering, psychosomatic illnesses, functional disorders and partially understood illnesses like M.E./CFS. As a starting point if they could just be taught that CFS symptoms are real, the cause is not yet known but CFS is often very disabling and that patients deserve to be treated with respect, also if they could pay more attention to ruling out other diseases that could be present and account for some or all of the symptoms.
    My GP also only does blood tests in the early morning which is unsuitable for M.E. patients Sitting up straight in the waiting room often for up to an hour with other patients is difficult too and there is always a loud radio or t.v. but it is probably unrealistic to expect any adjustments in these areas as many patients with other diseases probably have the same difficulties.
    I think it would be helpful in many ways if GPs were obliged to write down a summary of the consultation and give it to the patient at the end of the consultation, partly because it is often very difficult with a cognitive impairment and after the struggle to get to the doctor and the waiting time to remember what the doctor said but also to hold the doctor to account for what treatment or tests they provide and the justification for their choice.
     
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  14. Mel9

    Mel9 Senior Member

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    A separate waiting room with opportunities for lying down would also help enormously
     
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  15. Kati

    Kati Patient in training

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    Improving care means to me improving attitudes. It means updating practice in regards to a life altering disease. While the practical ideas are good ones, being treated nicely at the office will not change anything if the dr still believes it is a psychosomatic illness and block access to testing and treatment of co- morbidities such as OI and POTS
     
    Last edited: May 7, 2016
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  16. Aurator

    Aurator Senior Member

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    First, promote changing the guidelines. They're not fit for purpose, as all bona fide ME charities will tell you. The fact that there is still debate about the pros and cons of GET and CBT is no reflection on their potential suitability, but merely a symptom of the fact that no-one has done anything yet about retiring "treatments" that should never have been in use in the first place. Yes, they are "evidence-based treatments", as their proponents frequently and proudly maintain; what they don't mention is that they are treatments based on sham evidence. The distinction is crucial. Unless you change the guidelines, you're really just going to be wasting a lot more time and money proposing changes within those guidelines.

    I'm less than three miles from where you're based. I've been to my GP only four times in the last three years, and only once in connection with ME/CFS. I have an easygoing relationship with the doctors at my surgery, but this is mainly thanks to the fact that we don't talk about my ME/CFS diagnosis, even though it is the dominant health problem for me, and has caused me greater disability than permanent injuries sustained in a road accident many years ago that allowed me to qualify as a disabled athlete and compete in paralympic selection events - when I was still well enough to train and compete. People used to applaud my small triumph over adversity by competing as an athlete with a disability. No-one has given me any applause for living with ME/CFS, and that task has been many times harder than competing in sport at a high level with a physical handicap ever was.
     
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  17. Justin30

    Justin30 Senior Member

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    So after becoming severe. Life is srastically altered I am housebound/bedridden mostly.
    I havehad seizures on the way too Drs appintments and have been bed ridden by them.

    What would help:

    - @ home blood draws by nurses
    - a ward for ME patients to get works up in the areas of immunology, neurology, GI, Pain and sleep. Basically a medical stay when symptoms are severe and a person can leave home
    - Telephone or Skype Consults
    - thorough medical workup at onset following all suggestions laid out in ICC/CCC Criteria (all basic blood work, Autoimmune disease, MRIs, Viral, Bacterial, parasite, etc)
    - priority specialist consults to immunologists, endocrinoligist, neurologists, etc. Eliminate wait time.
    - access to at home care and nurses for administistration of drug therapies if needed.

    The hardest part about having this disease is knowing that I can feel the sickeness throughtout my whole body and because my basic blood panel doesnt show Im dieing I am disregarded.

    I feel let down and unfairly treated. In my case if the Drs had listened to what I was telling them I may not be as sick as I am now.
     
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  18. mfairma

    mfairma Senior Member

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    I see an arrhythmia specialist in a couple weeks and then I guess will get the surgery sometime after that. I'm not too worried about it. Aside from the expense, it's really not a concern by comparison to ME. If my wife hadn't insisted I go to get it checked out, I would ignored it much, much longer. Thank you for asking!
     
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  19. taniaaust1

    taniaaust1 Senior Member

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    Hi Keith, Im sure the ME/CFS community is very happy to have a research look at improving the doctor-patient encounters but as the others said, most of it comes down to very poor understanding of our illness from the doctors and often negative things expressed towards us due to the doctors not understanding.

    Ive had many doctors refuse to see me as they just say they are uncomfortable having a patient with this illness, the last 2 doctors who took me on, would only do so if I was under the care of a ME/CFS specialist too. I know someone back in my home town who hasnt no doctor as she cant get in with a dr specialising in ME/CFS as they are booked out and without that, noone will take her on or dont know what to do with her (the more severe the ME/CFS the harder it is to find a doctor willing to take you on).

    But the things you are thinking of are a start in the right direction if doctors could be trained on "how to treat us right' eg our care needs (not medically treat us but just appropriately treat those of us eg not leave us sitting a long time when we are about to fall off our seats in the waiting room etc). Our care needs are thou so complex we really all should only have specialists in this illness dealing with us as its way too much for an ordinary doctor to know.

    Right now much of the care we get is completely inappropriate, this causes many of us not even to be able to get to a dr, I have to mostly now rely on ambulances when I need a dr just cause I cant get into a drs clinic. (sometimes ringing an ambulance as much as every week or 2 for emergency care as my state goes beyond normal clinic drs care as Im not getting any medical management cause of inability to get to clinic).

    I've had doctors have to ring an ambulance (2-3 occassions) cause my state got so bad in the waiting room waiting that collapsed. Those with severe ME/CFS SHOULD NOT be having to sit in a chair and wait in a waiting room getting illner and illner by the moment, wondering if we are going to make it to our appointments then make it throu them.

    This issue has been got around for me at times by clinics doing various things (usually thou only after I've collapsed there on a previous occassion due to their ignorance of how ill I am. Due to this I find it disturbing everytime I go to a new dr as I often have to go throu all this all over again, its like every new dr needs to see how ill I get before they believe it and be accomindating for this).
    eg

    - One doctors appointment we had to hold outside in the public walkway of a shopping complex with people walking by as I found I couldnt enter the clinic that day due to too much perfume throu the room from other patients (which would of caused me to collapse.. I have postural orthostatic tachycardia syndrome (POTS) with the ME/CFS, canadian ME/CFS criteria, and POTS can be also triggered by chemicals hence I can collapse on exposure). This is where appointment timing may be important for some of us. For me due to insomina I often dont wake up till 11am but if I didnt have this issue I could be put first at appointments before the rooms have filled with perfumes.

    How many drs are aware that many of us can have severe issue with others deodourants/perfumes in the waiting room? How many doctors will cater for this?, it seems not many and this prevents me from being able to go to new drs.

    Two of my doctors ended up leaving off their deodourants if they knew they had an appointment with me that day as they knew it would make me worst. So that's one point, doctors should be considering when seeing a ME/CFS patient... there own hygiene practices before they even see the patient. Some of us react and start to crash if the doctor has just shampooed hair etc, I try to have any meetings with people in afternoon due to this by then the doctors shampoo and soap has usually worn off (deodourants thou dont always wear off and can be there all day)

    My ME/CFS dr used to actually have a full length cosy couch that his ME/CFS patients could lay on while waiting. This was great as at times I even slept then while waiting (usually I was the only person in that room too).

    Other clinics Ive been to have provided me at times (usually only when Im about to collapse) a spare room with a bed to lay on while waiting. This thou has at times been an issue cause at times their spare room has been in use.

    One time I was forced into laying on the hard cold cooridoor floor of a clinic with people walking by my head less then an arm length away (I was worried I was going to get kicked in the head) as one clinic didnt want me laying in the main room on the carpet where everyone could see me there. Ive been in that situation in hospitals too when I got told there was no spare bed while I was waiting to see a dr. (so its easier now that I just get taken in by ambulance).

    My dr ended up going to phone visits with me but then freaked out after doing that for quite a while as she cant monitor me and I have a ton of severe health issues going on so in the end she told me she couldnt be my dr anymore as if something went wrong, she was worried she'd be liable.

    I've been unable to get another dr since then cause im homebound and the local drs clinics wont come out to me unless I can get to them first. Ive been unable to get to my specialists for various issues I have for over 2 years, my medications have been just left all unsorted (specialists were trying to sort medication stuff eg doses and better drugs but I couldnt get back).

    the lasted thing is I torn my shoulder tendon and hospital told me that Ineeded physio but couldnt get to a physio so this meant my arm has helped badly so I cant now raise an arm up and have it in a sling 90% of time.. the latest now is hospital has told me I will need surgery on it (all cause I was homebound and couldnt get a physio to come out to give me the care I needed). So now Im taking maximum doses (actually sometimes over) of pain killers to try to relieve my pain.

    All my medical issues always complicate due to lack of medical care with being homebound (I can only leave my home with a carer to push my wheelchair).

    ......

    The ME/CFS patients who are that bad that they need very low noise and lightnning, you wont get them going to an ordinary clinic visit anyway as those ones usually cant leave their beds at all and no way should they even be attempting to leave their house for an appointment cause the act of doing that brings very severe consquences to them (you cant protect those ones enough.. just someone walking by and movement or the bumps in the road of the drive there can make them worst). Those ones should only be having home drs visits (very short ones).

    ....

    Another big issue there is which causes problems between doctors and patients is that there needs to be an good assessment thing for ME/CFS. Drs do not understand how badly this patient group is at home and doing, they think cause a patient has got in, they usually assume the patient can do that so think they are fine but rarely realise that that may be the only time in a week that patient has got out of bed. The ME/CFS person has usually preemptive rested up sometimes for days for the appointment and then may spend rest of week recovering.

    Drs should be refering ME/CFS on to the help services they may need eg home help, carer support etc. This is so rarely happening cause there is a huge blank there in the drs understanding on what is going on in the patients home life and this is due to I believe lack of a good assessment for form ME/CFS on this (there needs to be one made up specifically for our illness to cover all the areas severe ones with this have issues with).

    Simple things should be being assessed eg can you do your dishes? do you manage to get your groceries when you need to (I've often been left without food being too ill to shop or sort out shopping), what's your diet like? are you managing to cook? etc etc. Why isnt this routinely done by doctors with their ME/CFS patients? Why arent the severe issues this group is having in taking care of themselves being recognised? (Ive used my cat litter container at times for a toilet when I get too sick to be able to get myself to the loo (the cat used it too). I dont think Ive had a dr ever ask me "do you have trouble getting to the toilet?)

    crazyily ME/CFS people are being left who cant do those things. (my dishes sometimes get done by another once a fortnight, my house is so discusting Ive been thinking of ringing the health dept).

    If you want to find something to do to help ME/CFS patients, I really suggest to form some assessment form to assess ME/CFS which doctors can be encouraged to use (to make sure they then understand how their ME/CFS patients truely are). To try the bridge the lack of understanding doctors have (drs seem to understand the issues the elderly have, so why not us?)

    (I have trouble doing things like getting my meds right due to ME/CFS brain fog, Ive ended up in hospital with an accidental overdose due to that but have been still left in this situation).

    Another thing, Ive found social workers, counsellors generally shocking at dealing with ME/CFS patients due to this illness is too complex for them to understand. I've been given so many unsuitable suggestions by them including to get a sheep (when my backyard turned into a near jungle as I cant do my garden). How when Im so sick could I even take care of a sheep?

    too often these ones have made me feel worst due to completely inpracticable advice eg another piece of advice I was actually given by a professional.. "go out and see friends or go for a walk if stressed" (said when I use a wheelchair and cant get around without being pushed! Im stuck at home). All the personal dealing with ME/CFS people should be trained in this illness before trying to counsel any of us on it (I once tried to commit suicide after a counselling session went wrong due to complete inappropriate things being said, I will no longer phone help lines if down due to this).
     
    Last edited: May 8, 2016
  20. Keela Too

    Keela Too Sally Burch

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    So very much that could be improved, and many good suggestions in this thread.

    NICE guidelines obviously need to be reviewed, but in the meantime lurking within them is the recommendation for patients to use a Heart Rate monitor & to keep "exercise" to between 50 & 70% of calculated max HR.

    I did a post here. http://sallyjustme.blogspot.co.uk/2015/11/HRmonitoring-NICE.html

    Greater awareness of this amongst both doctors and patients would help.

    And especially that ME patients' HRs tend to be more volatile than normal healthy people's. So to we don't need to "walk briskly" (as was suggested to me early in my illness) in order to hit this 50 - 70% zone. Healthy people may need to walk like this to bring heart rate up into this zone, but with ME folk much lesser activities "exercise" us!!
     

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