We believe you, so crack on with it and collaborate!

Paper people holding handsI’ll be writing my blog posts for people with M.E. and for my colleagues in the Pharmacy profession based on the facts and I will assume (take for granted) that everyone automatically knows M.E. is a neurological illness.

I know about all the politics from personal experience, believe me, I know too well. I shouldn’t feel the need to explain why or how I know, I will at some point when it’s less painful, but I will just tell you that I’ve had 27 years of mistreatment and stigma. I know all of our experiences will be different and I don’t purport to represent all of us but there are common themes in what we have all endured. I don’t need telling at every available opportunity, as this assumes I don’t know what it’s like for us, when I’m all too aware.

We should start again, from a positive position, where we assume a biological aetiology and not even entertain the idea that ME is psychosocial or a made up illness. I sense that every time we jump on someone on Twitter to tell them about how we’re disbelieved, that this has the potential to make people question whether M.E. is real even though they weren’t already thinking that. We can’t keep on with this, trolling people who are trying to do positive things. It perpetuates the misinformation about us being crazy hypochondriacs. Behaving badly and disrespectfully certainly doesn’t do the cause any favours whatsoever, especially when it’s towards other M.E. sufferers and those without the illness who are genuinely trying to help us. That doesn’t help people, it further alienates us and is what gives M.E. patients a bad name.

I wrote last week of some positive awareness news from Norway. We should celebrate that we’re going through a pivotal point in M.E. history. The tide is turning due to everyone’s campaigning and bio research paper after bio research paper being released. Stigma and disbelief of our illness is starting to be eroded away. We need to keep our cool and forge on, putting politics aside for those we need to have that fight with.

I’m deeply concerned that if we’re not careful we will blow it. We will blow the progress that’s being made from the awareness which we have all had our part in raising over decades, by being angry with those that are trying to help, rather than uniting and getting behind them. I’m angry too but let’s channel it constructively.

I believe we will only achieve what we are entitled to by coming together as patients, charities and health professionals, collaborating to reach our aims. If you don’t like something, join up and change it. Of course we should challenge stigma and misinformation wherever we find it but where we don’t, we need to concentrate on moving forward towards our goal of supporting and empowering people living with M.E., along with finding out more about the illness and ultimately a diagnostic test and a cure.

Since writing this article, I’ve added these three opportunities to engage with NHS and government policymakers about what we need for M.E. These are avenues we can use to campaign positively and constructively:

Please feel free to leave a comment at the bottom of the page. Comments will be moderated and all views will be respected.

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9 thoughts on “We believe you, so crack on with it and collaborate!

  1. Absolutely. Internecine arguments about how many angels can dance on the head of a pin* – these sap credibility, and drain energy from those trying to forge a path forwards, exactly as you say.

    * In modern usage, this has been used as a metaphor for wasting time debating topics of no practical value, or questions whose answers hold no intellectual consequence, while more urgent concerns pile up.

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  2. I couldn’t agree more with this and Cathy’s comment too. If everyone’s goal here is the same: for the research to be done that will give us a biological test, an effective treatment (or dare I even hope, a cure), then we shouldn’t be attacking one another over lesser issues. We shouldn’t be attacking each other full stop.

    If there’s a debate to be had, let’s have it, but let’s remember A) to show eachother some respect b) that you can disagree without making it a personal attack (or assuming that someone who disagrees with you must have some sort of alterior motive) and c) that most of the people advocating for ME sufferers are patients themselves and we each know what affect stress such as this has on our illness.

    And also stop for a moment and ask ourselves: how much does it really matter that this person sees this issue differently to me and what am I actually achieving by arguing with them about it? Is it worth both myself and the other person making them self (more) ill over? I bet the majority of times all it achieves is two very upset and unwell people.

    The research being done, the fact that Norway’s PM has taken notice of our cause, it’s all a big move forward. We are starting to get somewhere with this, let’s not dampen the sound of each others voices before we get there.

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  3. Yes. It’s ME and the suffering it causes that is the ‘enemy’ not other patients, who are just trying their best to get things moving in a positive direction.

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  4. You put this well. This is similar to what I was attempting to say in https://tipsforme.wordpress.com/2015/02/24/biopsychosocial-stress/ but you’re more succinct. I think as a community we need to have more awareness of when our internal debate is actually completely public (eg twitter) and how it would come across to random people stumbling on our tweets. I do think it’s tricky though the balance between having a skilful response (what is the best way to achieve long term aims such as wider fundraising for biomedical research?) and feeling like we can have free discussion about what we find difficult.
    Perversely, are the main publicists of psychosocial causes actually us now, whenever we say that isn’t the problem?! I know newspapers sometimes get it wrong but it’s actually fairly unusual they mention us at all. There seems to be a case for always stating causes in the positive eg new research shows x immune abnormalities in pwME and just not mentioning previous misperceptions. People are unlikely to run a marathon for biomedical ME Research if they have any reason to think the cause could be all in our minds.

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  5. Excellent project, with reference to your comment that we can assume professionals and/or the general public are aware that M.E. is a neurological condition, I was very surised to recently discover the lack of that knowledge!
    Our DOH in N.I sent a top health professional to the Invest in ME conference this year at our request. I asked for the lady’s now educated opinion of what she had learned by attending the event, believe it or not the first thing she learned was the WHO classify M.E. as neurological!
    Just a suggestion but it seems to me it would be very worthwhile to emphasise that fact and reference the WHO classification in your fact sheet for pharmacists.

    Liked by 1 person

    • Hi Joan. Yes I fully intend to use the WHO classification and cite it. I don’t assume that everyone knows this but I won’t be going into the psychosocial theories whatsoever or any sort of debate about it. I’ll be stating the fact that M.E. is a neurological illness and I’ll be referencing up to date evidence. It is unlikely to incorrectly occur to a pharmacist that it’s psychosocial because we have a very biological approach to illness, with our knowledge of physiology and pharmacology. It will be academic in nature and referenced throughout so that it is credible. We’re also hoping to attain endorsement of the resource from the Royal Pharmaceutical Society. Thank you for reading my blog and taking the time to comment. I’m very pleased you see this as a worthwhile project. Thanks, Emily.

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  6. Lots of support of support and advice you can get from pharmacies, but trick is educating ALL pharmacies so they have wider understanding of the breadth of symptoms sufferers may present with. It is really debilitating and each individual may need a different package or level of support. Often treating symptoms, providing listening ear and referral to services will be big support. Pharmacy training packs would be a great help. have you spoken to RPS?

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    • Thanks, great ideas. We’re hoping to get support from RPS and hopefully their accreditation for the resource. We’ll be using the info for a printed guide, as well as hopefully CPD articles in the PJ and other magazines like C+D and perhaps a technician’s one. We’re also looking for some funding for the project too. I’ll also copy this over onto the blog post specifically about the resource in case someone would like to add to it. Thanks again for your interest in what we’re doing, Gill.

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