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.
