It may sound strange…, but longer I live with this condition, more I get confused. I assume it is because I see more complicated facts of the condition.
World Health Organisation (WHO) describes ME/CFS is neurological disorder. (ICD 10, G.93.3) At the same time, ME/CFS is diagnose of exclusion. When medical practitioners cannot find anything to positively diagnose us with anything, they put us into “hard case” basket called ME/CFS.
ME/CFS is chronic condition. Just like any other chronic illnesses/conditions, people can die from severe cases.
With ME/CFS, very severe case becomes living hell. sufferers are trapped in paralysed and non functioning body with many severe symptoms. They cannot care themselves and have to be tube fed… Lynn Gilderdale ‘s attempt of end her life that tragically ended her mother’s assisted suicide prosecution is still clearly in my memory. Another tragic fact is a high suicide rate among ME/CFS. Life with ME/CFS is a constant suffering, isolation, stigma, misunderstandings, lack of support and no hope for future. Who wouldn’t get depressed with such life?
With mild and moderate ME/CFS, everything in life becomes challenge and struggle. While mild/moderate sufferers can still go out and do things, they face misunderstandings and ignorance about ME/CFS.
In my opinion, many different medical conditions are grouped into one and called ME/CFS. Some serious conditions, such as cancer, heart condition, lymphoma, and peculiar and rare illnesses, have been misdiagnosed with ME/CFS. There are too many combination of symptoms, varied severities, stigma, prejudices, politics, and activism come with ME/CFS…
Things that make ME/CFS very different from other chronic conditions are;
1. Ignorance (or should I just say human rights violation)
The diagnosis with ME/CFS is the end of medical care that there is nothing more doctors can do for us. (So, please go away and suffer in silence and leave us alone with other important illnesses.) For the record, I’m a rare and very lucky patient with compassionate and knowledgeable GP who enjoys the challenge of treating ME/CFS. Majority of sufferers are still trying to find a doctor who would at least believe ME/CFS exists or left without any doctor.
Despite ME/CFS is biomedical condition, majority of medical practitioners do not want to treat it, because of the complexity and it is time-consuming to understand/treat. On top of that, they do not have relevant information about the condition.
Governments hardly allocate research fund for ME/CFS. Without biomedical research into ME/CFS, we cannot have effective treatment. Some of biomedical researches into ME/CFS are on hold due to lack of funding… And a very little fund is continuingly wasted on psychological researches, which doesn’t give us any treatment. So far, the breakthrough findings about ME/CFS were funded by donation and/or private funding.
Despite of the magnitude of suffering, patients are left without treatment and/or support. Often we educate each other about ME/CFS and possible treatments.
Early diagnosis is critical for better prognosis. With the wide spread ignorance, many patients lost opportunity to stop the condition from progressing further. By the time they realised ME/CFS does exist, the opportunity for them to get better is long gone.
As far as I know, no other chronic condition has to go through what we have to go through.
2. Excessive/obsessive interests from psychiatrists group
Despite of patients and ME/CFS clinicians strongly express over and over that ME/CFS is biomedical condition, psychiatrist groups are still trying to declare ownership of ME/CFS as psychological condition.
Psychiatrists hijack government research fund in ME/CFS and use it to find any connection that ME/CFS is a mental illness. They just talk about their theories without examine a patient.
I would not resist ME/CFS is mental illness, if it gives me effective treatment and cure. I will happy to accept it is mental condition as long as I get better.
I was misdiagnosed with depression by my previous GP who doesn’t believe ME/CFS exists. I underwent treatment for depression. He told me I would get better in two years with the treatment. Instead, my condition progressed rapidly with increased symptoms and severity. I went from full-time accountant to bedridden nobody within 2 years.
Reason for my resistance against labelling ME/CFS as a mental illness is not only it is biomedical condition, but also mental treatment for ME/CFS can cause irreversible harm to our body.
There are conditions called Invisible Illness. They are illnesses that sufferer doesn’t appears to be sick. ME/CFS is one of them. If you see me in the surgery’s waiting room, you would wonder what’s wrong with me.
While we are out there for couple of hours and looking perfectly normal, people cannot see how much we had to rest in order to save enough energy for that 2-hour outing. How much extra efforts and time had spent to look presentable. Then, how badly we suffer afterwards . You don’t see how we crash after such little exertion and how we paralysed with fatigue and weakness.
While two hours of being ”out there”, we would be still suffering with excessive fatigue, weakness, pains, photophobia, heart problems, dizziness, sensory and information overload, brain fog, slowed information process, chemical sensitivity, noise sensitivity, plunge in energy level, paralysis, and so on. Unless you are really good doctor or you know the person’s suffering very well, you wouldn’t notice those symptoms.
If we are out there beyond our limitation, you would notice us getting pale, cannot stay upright, cannot talk, having twitches, shaking, having fit, and/or being collapsed. And we do our best not to show this in public.
Because people cannot see the symptoms, it is harder for them to understand and/or believe how sick we are.
The discovery of retrovirus XMRV and its possible link with ME/CFS shook the medical world in October 2009. Retrovirus is a type of virus that becomes part of DNA. Currently, there are three types of retroviruses and that are culprit of AIDS/HIV, leukaemia and lymphoma, and the third one, XMRV that is possibly linked to prostate cancer and ME/CFS.
While scientists were sucked into ME/CFS politics, big pharmaceutical companies have conducted their own researches and we know that medication for AIDS/HIV would prevent XMRV from replicating themselves. However, there are concerns of using the medicines for people with ME/CFS because they are too strong and it could harm rather than help… It’s ironic that the side effect of these medicines are typical ME/CFS symptoms.
Vasoactive Neuropeptide Autoimmunity is theory at this stage. I’m fascinated by the hypothesis because it explains almost all symptoms come with ME/CFS, including delayed response in our system. I’m participating in Bond Uni research based on this hypothesis.
In the past year, I recognised the needs of ME/CFS Awareness in local level. There is no practical support (except for my caring GP) or accessible ME/CFS support group. Of course, there is no awareness event around here. This environment needs to be changed. As a start, I’m thinking about organizing blue ribbon and ask people to wear it at the next ME/CFS Awareness Day/Week.
I might look into lobbying for antiviral medicine to be listed on PBS for ME/CFS treatment. (I’m just thinking loud at this stage…) It is a treatment that works for some people with ME/CFS. I want to try anything that is supposed to help and is safe. If it is not so expensive, my GP would have prescribed it for me already. If it is listed on PBS for ME/CFS treatment, I can afford to try it.
I suppose, awareness event should be accompanied with donation information.
Last year, insensible pillow fight awareness event by British ME/CFS support organisation made many of us upset, especially the ones who are bedridden.
We need something suits us better than insulting. I came across with wonderful fund-raising idea called Have a drink for ME . Please have a look at the site and see if it interests you.
As for the recipient of your donation, I would recommend two organisations, because they both have structure, clear objectives, accountability, transparency and possible benefit for me;
If you prefer to donate to Australian charitable organisation, I would suggest ME/CFS Australia . With your donation, hopefully they can do something for us in the future.