One of the biggest challenges faced by people who have chronic illnesses is that of being believed. Of being listened to by professionals, and finding people who understand that conditions like fibromyalgia, M.E. and so on are real, physical illnesses. After my encounter with the rheumatologist last week, I went back to a post that had been flagged up in the FibroME For Action Facebook community (link in the side bar) about the Barnet Clinical Commissioning Group’s pilot study in managing people with “Medically Unexplained Symptoms” (MUS). (more info here on the dx revision watch website)
This all sounds like a bunch of NHS jargon-speak, which it is, but essentially they were putting forward the idea that people with MUS (which they class as fibromyalgia, M.E, chronic pain, post-viral fatigue, CFS and “somatic anxiety/depression”) shouldn’t be referred on to secondary care (rheumatologists etc.) but should stay under the management of GPs . The purpose of this?
- “Reduced GP secondary [rheumatology, physio, OT etc] and tertiary [inpatient programmes] referrals.”
- “Reduced unnecessary hospital investigations and prescribing of medicines”
- “Reduced GP appointments and out of hours appointments to A&E or GP”
So, a pilot that’s designed to reduce access to specialists and prescribed medicines for people with conditions like fibromyalgia, M.E. and other chronic pain disorders . Well this can’t possibly go wrong.
This is clearly a cost-reducing exercise. But the NHS can’t just say “sorry, you’re just too expensive to treat” and needs to give some kind of reasoning behind their actions. Let’s start by having a look at how they describe those of us with “MUS”:
“Other terms used to describe this patient group include:…Bodiliy Distress Syndrome (BDS)”
Remember where we’ve seen that term used before? Our friend Dr. Fink, who considers these conditions to be mental disorders. So that’s concerning, for a start.
There’s another document here that goes into a bit more depth about exactly what people with MUS are like (other than “generally annoyed and in pain”, obviously). I want to highlight some choice quotes:
- “MUS cannot be easily ascribed to recognised diseases. They might be caused by physiological disturbance, emotional problems or pathalogical conditions which have not yet been diagnosed.”
- “More common in women”
- “Past health and psycosocial experiences may encourage some patients to minimise certain symptoms and over emphasise others to shift the doctor’s attention in a particular direction.”
- “Most people with MUS who see their GP will improve without any specific treatment”
This paints chronic illness patients as manipulative and hysterical. GPs are being told that anyone with an “MUS” doesn’t need to be referred to a specialist, that our symptoms are “emotional problems” and that we’re likely to try and manipulate our doctors to get what we want. Anyone who has been to a cynical doctor knows that sometimes, focusing on one particular symptom is the only way to get them to listen to you so you can get the treatment you need.
Here’s another quote from the same document:
“For MUS, good practice consensus recognises that not investigating may be best for the patient.”
The document recommends that to investigate – to give “credibility” to our pain and fatigue – is not good practice. This attitude belittles us, patronizes us and says “doctor knows best”.
Focus on managing symptoms rather than getting a diagnosis, don’t treat with drugs, saying that “a serious cause is unlikely”. This puts conditions like fibromyalgia, M.E., et al. under the “not so bad” group. And then we’re back to “just get some more exercise” as a cure.
This is dangerous. I believe this is an unsafe way to practice medicine. To tell medical professionals that when people come to their surgeries with medically unexplained symptoms, you don’t investigate to see what the problem is. This is why we are facing a massive lack of research into conditions like fibromyalgia and M.E. We are fighting a long battle to get the medical profession as a whole to treat these as conditions and diseases, rather than just a pile of “unexplained” symptoms. They’re being told it’s not worth their time, that it’s a waste of money and resources. That we are not worth the trouble. That, quite frankly, is appalling. Once again, it comes down to the tired, sick, exhausted and chronically ill to do their own research and fight the battle.
If you don’t look for a diagnosis but just manage the symptoms, people with chronic illnesses will go undiagnosed. They will not get the correct treatment. This is how we end up with people getting psychological treatment for a physical illness. Figures for the prevalence of illness will be inaccurate, and it will be very difficult to make the case for more research into these conditions.
I believe we need to be doing more research into these chronic conditions so we can find a cure for them. The attitude at the moment that “managing” the symptoms is enough. Please do read the documents I’ve linked to, I’m really interested in hearing other people’s views on what they say. And then let’s work out how we can change this.
Oh to hear the words that mean you finally have a diagnosis! Or rather, to be prodded for 15 minutes while you wear a hospital gown and have the rheumatologist say to you “yeah, it’s probably fibromyalgia”. Yey? I suppose? Well, I’m taking that as an official diagnosis as it’s probably the best I’m gonna get.
She seemed to think that fibro, CFS and M.E. were the same thing, which they’re clearly not. I’m not sleeping, I’m female, I’m overweight and I have pain. So, painkillers, sleep aid, get more exercise. Fibromyalgia as a stress/weight/being a female syndrome. Oh, also a nice leaflet from Arthritis UK that has this nice picture of some nice people meditating on the cover. Yoga and meditation for a cure. Yeah, no. I’m no expert, but I’ve read enough to know it’s not a “lose weight, take these pills and have a nice life” syndrome. It’s so much more than that. But there’s no funding for research, no-one wanting to look into fibromyalgia because it’s something that overweight women get so it’s not worth it. Eat better, exercise more, take pain pills. Repeat ad nauseam. Your illness is self-inflicted.
The unspoken words of “yeah it’s probably fibromyalgia” are “hey, at least it’s not something serious! At least you don’t have cancer, or arthritis, or HIV! At least you don’t have something we can actually see! You’ve just got something we have to take your word for, so y’know, it’s not serious”. It speaks volumes about how women with chronic illnesses are treated. Women aren’t seen as having high priority jobs – we’re all mums, or wives, or dinner ladies or nursery nurses or cleaners. Just pop some pain pills and you’ll be fine. You’ll get through. We’re not seen as executives, as researchers and CEOs and people who undertake “important work”.
A quote from the Kickstarter-funded film about M.E. titled “Canary in a Coal Mine”:
“There’s $16 million in Male Pattern Baldness. And we get $3 million bucks going for Chronic Fatigue Syndrome.”
Don’t tell me this isn’t a gender issue, because it is. Remedies for hair loss and research into Viagra get plenty of funding. Diseases that effect mostly women and can ruin their lives? Get very little. It is very much a gender issue. And the people who have to do the research are the women who are in pain, are exhausted and are looking for answers.
So my next step? Is to research. Research everything I can. Read everything I can and learn to understand it all because this is my health. No-one wants to become an expert in my health, so I’m going to have to. Those of us with chronic illnesses have to become our own specialists, because no-one else wants to.