ME/CFS patient poster

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This pamphlet was created to be used as a toolkit that can be used to create a 2-way conversation with your Doctor.

We are not performing research, gathering data or medical information. We don’t want individuals to complete any questionnaires. We are only seeking constructive comments both positive and negative.

I will post the poster we have created soon in another post

Thank you,

mecfs352352
Screen Shot 2022-05-24 at 9.55.34 am.png
Screen Shot 2022-05-24 at 9.56.49 am.png
Screen Shot 2022-05-24 at 9.57.04 am.png
 
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Comment on The Graphics:

(the only part I've looked at at the moment).

everyone is depicted with thermometers and often something on their heads suggesting "fevers".

This is not a typical symptom, so its overemphasize in the graphics.

everyone looks feverish and doctors take fevers seriously. Yet doctors do not take ME seriously.

common physical states for us to be in include:

lying down in bed with all the stuff you need with in one foot reach. no its not calm, or relaxing. some hooked up to feeding tubes and IVs.

sitting and looking out of it. maybe like in the cartoons, when you have stars and sparklers going off above your head as your mentally Out of It.

the body is hurting all over. often your writhing around unable to even rest.
 
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Chronic Neurological Disease:

recommend a more comprehensive term: its a multi-system disease. Its not just neurological.

recommend remove reference to depression listed here.

What Causes ME CFS

emphasize viral or infections plus toxins or moulds.

emotional stress, recent travel...these aren't Primary causes. Written like this, it suggests emotional issues are a common cause which they are not.


TREATMENTS- personally I object to reading about GET and CBT. This is occupying too much space in a brochure with limited space. These practices at not treatments. They should be mentioned in an asterisk (CBT and GET are not accepted treatments and can cause harm, citation).

the single known tool we have to "manage" this situation is Pacing. I'm unable to read all this today, as I am in a big PEM event.

Pacing means you must fully grasp your own limitations and stay within a limited energy envelop to prevent yourself from getting even sicker. This seems to be an important concept, but maybe its not right for this brochure.


the Depression Section:

This section over emphasizes one single illness we don't suffer from and I suggest saying far less here.

Comment on the doctor patient relationship - suggest deleting

Comment on activity levels: depressed people are told they should go forth an exercise to counteract the depression.

An ME person knows they will get very sick if they pursue an activity outside their activity window.

Overall, this suggests to me you need a stronger more detailed overview statement of what IS ME CFS. what happens when physical, mental and emotional exertion cannot be tolerated. And how made sicker and mostly all you can do is PACE, rest and make sure you don't make that mistake again (whatever the mistake was, living a life like normal people do).

because its just not : something which isn't depression. (depression mentioned too much on brochure)
 

wabi-sabi

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I agree with @Rufous McKinney

Recommend taking out the depression stuff in the current format. I'm not sure all the statements about depression are correct, for one. The important points you want to highlight are that exercise alleviates depression and worsens ME/CFS and that people with depression suffer from anhedonia, which people with ME/CFS don't.

I would also recommend highlighting PEM more. This is a very, very difficult concept for doc to understand, as inculcated as they are in the exercise fixes every disease mindset. You might include some tools for patients to explain what PEM is like and questions for docs to ask to assess PEM. For example, take out the depression section and put in an explaining PEM section.
 

wabi-sabi

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Here is the link to the 2015 IOM report of ME/CFS.

https://nap.nationalacademies.org/resource/19012/MECFScliniciansguide.pdf

Pages 15-17 have examples of the questions docs need to ask patients- that will elicit answers that diferentiate ME/CFS from feeling really tired. When they don't have lab test to fall back on, knowing the right questions to ask is really important. Docs that don't know the right questions will just ask if you are tired or run down, and of course everyone is tired and run down most of the time. But if you help them out with how to interview people, then they can get the right info.
 

Revel

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Hi, @mecfs352352. My thoughts on the proposed pamphlet, for what they're worth:

1. Amend the graphics

I agree with the members above that the graphics are a poor representation of an ME patient.
There seems to be some confusion as to what is meant by “flu-like” symptoms. Patients with ME typically experience “flu-like” symptoms during PEM/crash episodes. However, although we may feel as though we’re coming down with “flu”, our symptoms do not necessarily exhibit as such.

Rather than flushing, we tend towards loss of colour to the face (aside from the dark circles under our eyes which often become more apparent!). Many of us have actually lost the ability to sweat or regulate our body temperature properly and we often run a little “cold” rather than the high fever implied in the pamphlet’s images.

A better graphic would be one of extreme fatigue (but definitely NOT asleep or yawning at our desks, please, as photo images in ME-related articles all too often portray us!).

2. Target audience?

I am assuming that, since the patient has already obtained the pamphlet to take to their GP appointment, they have done their research, have self-diagnosed themselves as potentially having ME and wish to use the pamphlet as a tool with which to engage with their doctor.

The patient will most likely have already come across all of the information contained within during the course of their research and so, essentially, the pamphlet should be being aimed at educating the GP.

That being the case, there is no need for a section akin to “mansplaining” to the patient how best to speak to their doctor!

I find “Conversation with your Doctor” unnecessary at best, and somewhat patronising towards the patient. The issue is rarely about the patient being unable to communicate effectively with the GP and more about the medical system in which the latter works still considering ME a non-serious psychological problem that can be fixed with positive thinking, anti-depressants and exercise.

I also was not taken with the suggestion that one of the ways that ME/CFS can be managed is by “introducing a healthy diet” as though there is an assumption that the patient has not been eating appropriately either prior to or during the onset of their suspected ME.

Maintaining” a healthy diet is recommended for all of us, healthy or sick, but I have never found it to be a particularly effective tool in the management of my ME symptoms (they remain unchanged no matter how nutritionally well balanced my diet may be).

3. Core symptoms

There needs to be less of the sweaty “flu” stuff and more emphasis on relentless fatigue, PEM/PESE and also the fact that, regardless of whether the patient sleeps the recommended '8 hours a night', too much or too little, this sleep is non-restorative.

Depression is not a recognised symptom of ME and the space given to the “Difference between ME/CFS and Depression” section could be used more constructively than to compare ME with an unrelated illness. I understand (I think) the reasoning behind it, but still don’t consider it is appropriate, here, and the subject would be better covered in its own pamphlet rather than skimming over the main points without going into further detail. We are trying to create distance between the physical and psychological, to undo decades of harm, so randomly bringing in a section which mentions depression, no matter how well intentioned, is not helpful.

4. GET

It is concerning that despite GET no longer being recommended internationally, Australian GPs are still being encouraged to refer patients for this potentially harmful therapy. If this pamphlet does one thing, it should be to educate GPs that GET is not, and never has been, an appropriate “treatment” for patients with ME.
 
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lenora

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First off, you deserve a big round of applause for even putting together a brochure. Thank-you!

Second though, it does come off with both the patient and the doctor sounding as if "depression" is going on. The symptoms are of depression, to a certain extent, so it's hard to understand this from both perspectives.

Yes, I never, ever run a fever. This is common with ME, we can be ill but there is no fever. Symptoms can also unexplicably change, only to be replaced by ones that I never had before. e.g. My severely swollen lymph nodes disappeared, but other "new to me" pain replaced that symptom. I've had this for probably 35 yrs., so my doctors are well known territory....this is for new patients.

What are things that help people that the doctor can prescribe? There are things that at least help today. You aren't going to see an M.D. if you really want a Naturopath. Drugs take a minimum of 3 wks. until we become accustomed to them. Many side-effects will disappear in that time span. Don't overwhelm the doctor with all of the vitamins you take on the first visit. If you are asked, by all means, that's different. The first appointment is the longest and where you get to present your case...perhaps attention could be given to that matter.

I always approach a new doctor with: " I'm very ill and I really need your help." This gives the physician a sense of a patient being co-operative vs one who is aggressive and just wanting to argue with him/her. (And yes, both exist.) I have good relationships with my doctors, but it often takes more than one or two visits to build them.

Sufferers: Please give explicit details of what helps in order to aid these fine people who want to put together a brochure.

In my case, I've found that if I really want to deaden pain, Ace ice bags will numb it out. I even use them over the cord area.....I don't have to do that as often now, but in the beginning......! Others find heat helps, but I found that while it feels good, it leaves me in even worse shape.

You've obviously put a lot of work into this, and I admire your assistance. We have doctors in our group....what do you think would work best?

For patients: I've found that neurologists and rheumatologists, plus osteopaths (to help relieve stress that may cause pain...myofascial pain if one has FM) are the best bets for finding someone who knows about this illness. More doctors actually do know today, and will go the extra mile. Kindness means a lot....if you have a doctor who has that, if he/she can't help, perhaps he can refer you to someone else.

In the end, it all depends on the severity of the illness at that particular time. My doctors always believed me and would refer me to someone until I finally reached someone knowledgeable about the illness.

For patients: You may be seeing 2-3 doctors before you find one who can understand. Try to clear this when you make your first appointment....it will save you time and energy. Yours, Lenora.
 
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Comment on The Graphics:

(the only part I've looked at at the moment).

everyone is depicted with thermometers and often something on their heads suggesting "fevers".

This is not a typical symptom, so its overemphasize in the graphics.

everyone looks feverish and doctors take fevers seriously. Yet doctors do not take ME seriously.

common physical states for us to be in include:

lying down in bed with all the stuff you need with in one foot reach. no its not calm, or relaxing. some hooked up to feeding tubes and IVs.

sitting and looking out of it. maybe like in the cartoons, when you have stars and sparklers going off above your head as your mentally Out of It.

the body is hurting all over. often your writhing around unable to even rest.
Thank you for your feedback.

Due to the application we used to design the brochure, we decided to use their free use images. We agreed they were not the right images to use throughout the brochure, however, we struggled to find others that we thought better related to ME/CFS that were available through the application.

So that we can improve on these images in future, would you have any suggestions to what type of images would better represent ME/CFS.

Thank you,

mecfs352352
 
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Chronic Neurological Disease:

recommend a more comprehensive term: its a multi-system disease. Its not just neurological.

recommend remove reference to depression listed here.

What Causes ME CFS

emphasize viral or infections plus toxins or moulds.

emotional stress, recent travel...these aren't Primary causes. Written like this, it suggests emotional issues are a common cause which they are not.


TREATMENTS- personally I object to reading about GET and CBT. This is occupying too much space in a brochure with limited space. These practices at not treatments. They should be mentioned in an asterisk (CBT and GET are not accepted treatments and can cause harm, citation).

the single known tool we have to "manage" this situation is Pacing. I'm unable to read all this today, as I am in a big PEM event.

Pacing means you must fully grasp your own limitations and stay within a limited energy envelop to prevent yourself from getting even sicker. This seems to be an important concept, but maybe its not right for this brochure.


the Depression Section:

This section over emphasizes one single illness we don't suffer from and I suggest saying far less here.

Comment on the doctor patient relationship - suggest deleting

Comment on activity levels: depressed people are told they should go forth an exercise to counteract the depression.

An ME person knows they will get very sick if they pursue an activity outside their activity window.

Overall, this suggests to me you need a stronger more detailed overview statement of what IS ME CFS. what happens when physical, mental and emotional exertion cannot be tolerated. And how made sicker and mostly all you can do is PACE, rest and make sure you don't make that mistake again (whatever the mistake was, living a life like normal people do).

because its just not : something which isn't depression. (depression mentioned too much on brochure)
Once again, thank you for your suggestions they are much appreciated.

We agreed that GET and CBT were mentioned too much in this section. The reason we mentioned it as much as we did was due to the fact that General Practitioners in Australia are still instructed to prescribe these practices in order to attempt to improve the symptoms of patients with ME/CFS. However, we know from the literature that this is not the case and there is a reason they have been removed from the NICE and CDC guidelines for treatment for patients with ME/CFS.

You are right however, Pacing would have been important to mention. I think we decided to leave that out as we did not have the space, so we will look at a way to include some information, even if it is brief, relating to Pacing.

The note on depression is much appreciated, we did decide to focus on it too much, but when looking at comments from yourself and others, the depression section being too long has been common feedback and we will make sure we reduce the information relating to depression.

If you have any other suggestions or any questions relating to the brochure or this reply, please let us know.

Whilst there is obviously sections to be improved upon, we greatly appreciate your feedback as it will be very beneficial.

Thank you,

mecfs352352
 
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You might try a person in a wheelchair even, though that is overdone
yes, hard when having to use stock images.... People often shield their eyes and ears from light and sound, so thats an image. Lying down on a sofa. Wheel chair, some cannot stand or walk far.

Whilst there is obviously sections to be improved upon, we greatly appreciate your feedback as it will be very beneficial.
Thank you and your team so much for working on this project.
 
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Second star to the right ...
its just not : something which isn't depression. (depression mentioned too much on brochure)
I agree. It should at least be noted that 'depression' is a side effect of the life-numbing, crippling limitations and changes that ME creates in the patients life. It is NOT a symptom, it's a side-effect and should be noted as such, more or less in passing.
I find “Conversation with your Doctor” unnecessary at best, and somewhat patronising towards the patient.
Totally agree. And it's one of the salient ways that Drs tend to offset misdiagnoses as well as catch-all diagnoses like 'syndromes' ... it's always the patients fault, never theirs ....
Maintaining” a healthy diet is recommended for all of us, healthy or sick, but I have never found it to be a particularly effective tool in the management of my ME symptoms (they remain unchanged no matter how nutritionally well balanced my diet may be).
Again, totally agree.
There needs to be less of the sweaty “flu” stuff and more emphasis on relentless fatigue, PEM/PESE and also the fact that, regardless of whether the patient sleeps the recommended '8 hours a night', too much or too little, this sleep is non-restorative.
And again, couldnt agree more.
It is concerning that despite GET no longer being recommended internationally, Australian GPs are still being encouraged to refer patients for this potentially harmful therapy. If this pamphlet does one thing, it should be to educate GPs that GET is not, and never has been, an appropriate “treatment” for patients with ME.
A screaming, hair-on-fire AGREE !!!
 
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Hi, @mecfs352352. My thoughts on the proposed pamphlet, for what they're worth:

1. Amend the graphics

I agree with the members above that the graphics are a poor representation of an ME patient.
There seems to be some confusion as to what is meant by “flu-like” symptoms. Patients with ME typically experience “flu-like” symptoms during PEM/crash episodes. However, although we may feel as though we’re coming down with “flu”, our symptoms do not necessarily exhibit as such.

Rather than flushing, we tend towards loss of colour to the face (aside from the dark circles under our eyes which often become more apparent!). Many of us have actually lost the ability to sweat or regulate our body temperature properly and we often run a little “cold” rather than the high fever implied in the pamphlet’s images.

A better graphic would be one of extreme fatigue (but definitely NOT asleep or yawning at our desks, please, as photo images in ME-related articles all too often portray us!).

2. Target audience?

I am assuming that, since the patient has already obtained the pamphlet to take to their GP appointment, they have done their research, have self-diagnosed themselves as potentially having ME and wish to use the pamphlet as a tool with which to engage with their doctor.

The patient will most likely have already come across all of the information contained within during the course of their research and so, essentially, the pamphlet should be being aimed at educating the GP.

That being the case, there is no need for a section akin to “mansplaining” to the patient how best to speak to their doctor!

I find “Conversation with your Doctor” unnecessary at best, and somewhat patronising towards the patient. The issue is rarely about the patient being unable to communicate effectively with the GP and more about the medical system in which the latter works still considering ME a non-serious psychological problem that can be fixed with positive thinking, anti-depressants and exercise.

I also was not taken with the suggestion that one of the ways that ME/CFS can be managed is by “introducing a healthy diet” as though there is an assumption that the patient has not been eating appropriately either prior to or during the onset of their suspected ME.

Maintaining” a healthy diet is recommended for all of us, healthy or sick, but I have never found it to be a particularly effective tool in the management of my ME symptoms (they remain unchanged no matter how nutritionally well balanced my diet may be).

3. Core symptoms

There needs to be less of the sweaty “flu” stuff and more emphasis on relentless fatigue, PEM/PESE and also the fact that, regardless of whether the patient sleeps the recommended '8 hours a night', too much or too little, this sleep is non-restorative.

Depression is not a recognised symptom of ME and the space given to the “Difference between ME/CFS and Depression” section could be used more constructively than to compare ME with an unrelated illness. I understand (I think) the reasoning behind it, but still don’t consider it is appropriate, here, and the subject would be better covered in its own pamphlet rather than skimming over the main points without going into further detail. We are trying to create distance between the physical and psychological, to undo decades of harm, so randomly bringing in a section which mentions depression, no matter how well intentioned, is not helpful.

4. GET

It is concerning that despite GET no longer being recommended internationally, Australian GPs are still being encouraged to refer patients for this potentially harmful therapy. If this pamphlet does one thing, it should be to educate GPs that GET is not, and never has been, an appropriate “treatment” for patients with ME.
Thank you for your comments they are greatly appreciated.

In your opinion, how do you think we could accurately represent extreme fatigue, as we struggled to find the appropriate images to portray this.

In another post that we posted recently, we have also produced a poster aimed at educating doctors about ME/CFS. The aim of this brochure however, was to supply patients with scientific evidence based information to give them a starting point, so they do not need to surf journal articles for this information. Using google can be a rabbit hole and can often send patients down the wrong path and is sometimes hard to find evidence based information.

We understand that some people may find the "conversation with your doctor" section may be unnecessary, but for people who have not done lots of research in this area, we believe it may be helpful for them.

There is actually a typo in the healthy diet section, it is supposed to say that incorporating a healthy diet MAY help to manage your symptoms, as their is scientific evidence supporting this, however the evidence does state that it may not be helpful for everyone.

We probably did over compare ME/CFS and depression, however the aim was to help people understand that they are not the same thing, as patients with ME/CFS are often diagnosed by doctors as having depression when in reality they do not. We tried to fit all of our information in one brochure and while the depression section could have its own brochure, the aim was to fit all our information into one brochure.

As mentioned earlier, we also posted a poster aimed to educate doctors about ME/CFS. However, while we can suggest that GET and CBT are not effective treatments and may worsen symptoms, it is hard to tell Australian doctors that what they have been instructed to prescribe people with ME/CFS is wrong and that when treating patients they should go against the protocol for treatment.
 
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First off, you deserve a big round of applause for even putting together a brochure. Thank-you!

Second though, it does come off with both the patient and the doctor sounding as if "depression" is going on. The symptoms are of depression, to a certain extent, so it's hard to understand this from both perspectives.

Yes, I never, ever run a fever. This is common with ME, we can be ill but there is no fever. Symptoms can also unexplicably change, only to be replaced by ones that I never had before. e.g. My severely swollen lymph nodes disappeared, but other "new to me" pain replaced that symptom. I've had this for probably 35 yrs., so my doctors are well known territory....this is for new patients.

What are things that help people that the doctor can prescribe? There are things that at least help today. You aren't going to see an M.D. if you really want a Naturopath. Drugs take a minimum of 3 wks. until we become accustomed to them. Many side-effects will disappear in that time span. Don't overwhelm the doctor with all of the vitamins you take on the first visit. If you are asked, by all means, that's different. The first appointment is the longest and where you get to present your case...perhaps attention could be given to that matter.

I always approach a new doctor with: " I'm very ill and I really need your help." This gives the physician a sense of a patient being co-operative vs one who is aggressive and just wanting to argue with him/her. (And yes, both exist.) I have good relationships with my doctors, but it often takes more than one or two visits to build them.

Sufferers: Please give explicit details of what helps in order to aid these fine people who want to put together a brochure.

In my case, I've found that if I really want to deaden pain, Ace ice bags will numb it out. I even use them over the cord area.....I don't have to do that as often now, but in the beginning......! Others find heat helps, but I found that while it feels good, it leaves me in even worse shape.

You've obviously put a lot of work into this, and I admire your assistance. We have doctors in our group....what do you think would work best?

For patients: I've found that neurologists and rheumatologists, plus osteopaths (to help relieve stress that may cause pain...myofascial pain if one has FM) are the best bets for finding someone who knows about this illness. More doctors actually do know today, and will go the extra mile. Kindness means a lot....if you have a doctor who has that, if he/she can't help, perhaps he can refer you to someone else.

In the end, it all depends on the severity of the illness at that particular time. My doctors always believed me and would refer me to someone until I finally reached someone knowledgeable about the illness.

For patients: You may be seeing 2-3 doctors before you find one who can understand. Try to clear this when you make your first appointment....it will save you time and energy. Yours, Lenora.
Thank you so much for these comments, they were really constructive and helpful.

We should have explained the depression section better as we were not trying to make it sound like they were both occurring, rather that there are distinct differences even though many patients are wrongly diagnosed as depression rather than ME/CFS.

That is really good suggestion as your right, the questions and information we have listed to bring into that first appointment with your doctor is probably too much for one session and will most likely be more helpful over two or three sessions. It is also good that you aim to develop good relationships with your doctors and by giving patients this information we are definitely not trying to promote patients to argue and be aggressive towards their doctors as they are they are the people trying to help you.

Thank you for all your suggestions for patients and I hope they read your comments to gain ideas of how they may be able to manage some of their pain.
 
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yes, hard when having to use stock images.... People often shield their eyes and ears from light and sound, so thats an image. Lying down on a sofa. Wheel chair, some cannot stand or walk far.



Thank you and your team so much for working on this project.
Thank you for the suggestions, we will look at finding some images that will represent these as they will represent ME/CFS greater than many of the images we have included.
 

Pyrrhus

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Using stock images is tough. I would look for images that convey things more like brain injury or even stroke, You might try a person in a wheelchair even, though that is overdone. But it does encapsulate the experince better than an ice pack and thermometer.

These might be helpful:
For those that are not aware, Pinterest is mainly about saving images.

I have saved a couple of thousand on ME and ME/CFS along with over 3000 more on Chronic Illness/Spoonie/Invisible Illness/Chronic Pain:

https://www.pinterest.com/tomkindlon
The German ME/CFS Society (Deutsche Gesellschaft für ME/CFS) has produced a new series of press images to be used in media articles. These images are intended to replace the often inappropriate images that accompany articles about ME.

https://www.mecfs.de/presse/pressefotos/

And this might be interesting: