Finding answers and asking questions

Firstly, I would never seek to diminish anyone’s experiences of illness. Things are bad enough for us as it is.

Some of us are motivated in different ways. Megan at My Chronic Life Journey is passionate about increasing understanding and has begun working on the Foggy Frog and the Pain Gang campaign. Some people like, Leigh Hatcher, write a book and start a forum. Others make submissions and lobby the IOM in the US, which you may have seen on Twitter if you follow issues. We need all these things.

I’ve written about how I’ve read every book in the library, and requested the library buy more (like Toni Bernhard‘s great books). I’ve accessed the online library of Australia’s largest research institute and read dozens of scientific papers. I follow the debate on Twitter and I’ve scoured all the same pages of the internet as you.

I want to solve this. Well, I want scientists to solve this. It seems bizarre to me that we sequenced the human genome more than a decade ago, that 45 years ago we conquered space travel and landed on the moon, that we can clone sheep and pigs…Higgs bosun, Mars rover, edit genetic code, make organs from stem cells…the list of achievements is huge and impressive. But we still suffer in our homes (at best, some of us have to move back into our parents’ homes or even into hospices) because there is not the scientific or political impetus to push it.

I might be wrong, but I feel like one of the most important things for me is fighting for a solution. I don’t just want my legal case to be successful because I can prove that an enterovirus caused my disease. I want my health back and I want people to be helped and I want to find solutions for all the other young women, middle aged women, everyone who has ME so that no one else has to go through this.

You’ve probably seen the news story about how the US spend six times as much on researching male pattern baldness as they do CFS. And they struggle even more than other English-speaking countries with differentiating between ME and CFS.

I wrote to my member of parliament to ask about Australia’s funding. She took four months to write back and didn’t even name a figure. It says that the body who grants funding as received 24 applications related to fibromyalgia, CFS and ME in the last 14 years and they get 4000 applications each year, and suggested I contact ‘CFS Australia’  and ‘Fibromyalgia’ (no such groups).

When I was diagnosed I received a list of names – all from the same specialist. Post viral fatigue, M.E., myalgic encephalomyelitis, fibromyalgia, CFS. No wonder I was confused for so long.

We know so much about myalgic encephalomyelitis and its triggers, why can’t it be separated out from the CFS label and looked into? This should help both people with ME and who’ve been given the CFS diagnosis as the treatment will either help them or drive medical professionals to dig a little deeper and find the cause. For example, a friend was given the CFS diagnosis and just expected to live with it. Her mother’s research found it was rickettsia but what would have happened if her mother hadn’t persisted and she’d continued to be so ill?

I was kicked out of a facebook support group today for posing the question, ‘should ME be looked at separately from CFS?’ and posting a link to the Hummingbird’s Foundation website. I don’t mean to upset anyone who suffers from debilitating fatigue, dizziness, pain, fog, IBS, allodynia and intolerances, it sucks, which is why I want to change things.

I’m interested in what you think? Am I wrong? Am I right? How should I go about this?

About someonesideaofluxury

writing from home with my feet up
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8 Responses to Finding answers and asking questions

  1. I’m so, so sorry you had to go through the stress of being kicked out of a so-called support group for posting a question that could have helped so many. I’ve found in many ME support groups there seems to always be a few people with “CFS” who take extreme offense when the suggestion is raised they may not have ME. I know your intent would never be to minimize someone’s illness, but my guess is some CFS individuals feared being cast out from the one community they’ve been told they belong to. Doctors tell them they have “CFS/ME” and they begin claiming all the ME facts as applying to them and all ME patients as their co-sufferers. Implying they may not have the same condition as us (which studies have found 90% of CFS patients do not) can create a fear of isolation and being all alone with no answer for their symptoms once again. Some may also fear being seen as malingerers or having a psychiatric illness if told they can no longer claim the neurological illness ME as their own. You’d think people would want the correct answer rather than the wrong one, but that fear of isolation and the unknown can be a powerful motivation to cling to the untruths told to them by their doctors.

    In general, I’ve found it best not to bring up the difference between ME and CFS, huge though it may be, within ME related groups. It nearly always starts a fight with a few of the CFS patients. As much as it drives me crazy to see people using the combination terms “MECFS,” “CFS/ME,” etc, I bite my tongue and leave it be – in those settings, at least. It’s heartbreaking, because knowing the truth will only help people in the end, but sometimes you have to ignore the misinformation, the posts by people who very obviously don’t have ME, etc if you want to remain part of these groups. As much as you want to help people, sometimes they simply don’t want that help.

    Hang in there, and try not to let what happened stress you out. You’re doing all you can to raise awareness (and the Hummingbird site is a terrific resource to use!). It’s not easy to raise awareness when you’re this sick. You should feel proud of your efforts. Rest assured you’re making a difference in people’s lives. You just can’t win them all. Hugs…

    • Thank you for your thoughtful response and understanding my intent, I thought about you when I wrote this.

      I would be so glad if I didn’t have ME, reading Dr Byron Hyde’s book ‘Missed Diagnoses: Myalgic Encephalomyelitis & Chronic Fatigue Syndrome’ I really wanted to have a list of tests to take back to my GP to find out what was really wrong with me. I wasn’t looking for validation of an ME diagnosis, quite the opposite!

      I joined two Facebook groups at the same time and there is quite a big difference between the two. That one probably wasn’t for me anyway, it was less about solutions and more about sympathy. The other ‘spoonie’ group seems a bit more my speed, suggesting work-arounds and little things we enjoy (I think lots in the group have rheumatoid arthritis) but I should be spending less time on Facebook anyway.

      I probably am a little argumentative by nature, so I’m genuinely interested in raising the issue and hearing other people’s views but rather than take this up with people who need their energy (and everyone’s compassion and support), I want to take this up with the Department of Health, the government and people who have the power to make decisions about funding research.

  2. Megan S says:

    I think, at least here in Australia, the doctors and the general population don’t know much about these illnesses. I’m with you in that we need to be fighting for a cure and I believe that raising awareness in the community (both medical and general) is probably the first step in getting the funding bodies (e.g. Government) to actually put realistic amounts of money into research.

    I don’t know the answer to whether M.E. and CFS should be viewed as separate but I do know research is still needed to determine what exactly ME, CFS and Fibromyalgia are. My doctors still view them all as the same thing on a scale… I’m not sure I agree.

    • Hello Megan,
      I hope you don’t mind me mentioning your campaign in the blog post (I can take it out if you prefer). You are right about knowledge being the first step.
      Having working in strategic communication, politics and science, I know lobbying politicians is the only way to get funding for research. I don’t think pharmaceutical companies are going to be as much help as government funded research.
      I met a doctor in a social setting the other day and she said “oh, chronic fatigue syndrome, I have a few patients with that” and I asked her how their treatment was going and she politely told me she recommended a multidisciplinary approach. (ie, rest, gradual exercise, healthy eating) and it struck me that there are hundreds of doctors in my city, each with their own little batch of patients, suffering, and I was pretty sad about that.

      About the scale, I definitely have ME but I’m doing a lot better than people I know with CFS and fibromyalgia. I can leave the house a few times a week, do a little work, watch TV sometimes, read, make myself a peppermint tea and I know that is a lot more than many of us can manage, so I wouldn’t want anyone to think I’m trying to belittle CFS in any way and I think we are all in this together.
      Phew, long reply!

      • Megan S says:

        Thanks for the reply. I definitely don’t mind you mentioning the campaign, the more people who do the better I think. 🙂

        There is a lot of small groups here as well, each being treated differently. I think the societies and groups help a lot with bringing people together though.

  3. The trouble with CFS is that it covers such a broad spectrum of disease from neurological illness to mental health issues to ideopathic fatigue. Just because patients have similar symptoms doesn’t mean their symptoms will respond to the same advice and treatments if their symptoms have a very different cause. For this reason I think CFS is a meaningless label and we need to work to identify the different causes of diseases that come under the CFS umbrella. Fatigue is common to pretty much every illness I can think of from cancer to the common cold so to categorise disease by that one symptom alone is fairly pointless. As a patient with ME I wouldn’t say fatigue is even close to being my most debilitating symptom and advice that focisses primarily on fatigue has made very little difference to the symptoms I experience. The experiences of many patients with a diagnosis of CFS bear so little relation to my own that I struggle to see how they could be the same disease. Just because I think ME should be treated as a distinct disease however, doesn’t mean I don’t take the experiences of other CFS patients seriously. I think some people take offence if you try to separate ME form CFS because they assume you are dismissing the seriousness of the symptoms experienced by patients who don’t meet the ME criteria. Wanting ME to be treated as distinct though doesn’t mean I am dismissing anyone elses illness as being any less serious or deserving of help, but trying to treat different conditions as a single entity just muddies the water and makes it harder to find treatments for all CFS/ME patients whatever the cause or severity of their symptoms.

  4. dif4us says:

    The hummingbird foundation was illuminating, thank you. That chart was fab! There is so little education about this topic to the public. It’s frustrating and terrifying. As I am in bed mostly I rarely am exposed (lol) but too many are affected these disabilities for it to be such an un and mis informed topic!

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