I’ve had two comments left on my blog this week telling me how to cure myself. One is to have coffee enemas and the other is to avoid high oxylate foods like almonds and spinach, all packaged foods and wheat. I’m aware they were just trying to be helpful, but maybe it would have been polite to actually read my blog before giving me advice. What I will say, though, is that you have to be extremely careful doing enemas if you have EDS as our very thin skin perforates easily and we could rupture our bowel.
I nearly had a blue fit this week when someone told me Dr Seneviratne was no longer going to be seeing patients. He’s the only MCAD specialist in the entire UK quite frankly, especially if you have Ehlers-Danlos related mast cell disease. There is only one other doctor who sees MCAD patients, Dr Grattan, and as a Dermotologist he specilalizes in skin symptoms whereas all the MCAD patients I know have much more problems with the gut and bladder. However, I’ve since heard that Dr Seneviratne is only taking a 3 month sabbatical from Nov-Jan and will be back in 2016. I do hope so cos otherwise we’re all up shit creek without a boat let alone any paddles.
The Hitler-esque treatment of sick and disabled people here in the UK continues unchallenged. Shit-For-Brains (or Work & Pensions Secretary Iain Duncan Smith as he’s known to most people) has decided to target this group in his next round of cuts. Er, I’m sorry but hasn’t he been targeting them since the day the Conservative Party got into power?! He wants eligibility criteria for claiming sickness benefit tightened up, even though it’s already tighter than a duck’s arse and that’s water tight, and thinks it should be a short-term benefit to help people back in to work. Hurrahhhh!! Chronic diseases are all now cured, praise be. The effect of his benefit reforms can be seen in this article which shows that 10,000 people died between 2011 and 2014 after being found “fit for work”. Let’s be honest about the situation – the Government want to scrap the welfare state. Period. The sooner the European Court put this Government on trial for abuses against Disabled people the better.
Two more of my friends with ME have, in the past few months, also been diagnosed with Ehlers-Danlos Syndrome. One has had severe ME for two decades, the other severe ME for three years. It’s also fairly obvious that both have mast cell disease, although their health issues make it almost impossible to travel to see the right doctors for a proper diagnosis. The evidence for this triad of diseases is stacking up by the day and points ever more to my Canary theory of mast cell activation being at the root cause of ME in a sub-group, if not all, patients. I’ve always known that ME isn’t a neuro-immune disease. It’s an immune disease full stop. The effects on the central nervous system are a secondary symptom of immune activation (the canary post explains how mast cells affect the brain and nervous system). Researchers are looking at the wrong things and going down the “one virus causes ME” road is a complete waste of time and money. They seem to think ME is “multi-factoral” but it’s not. It affects virtually all bodily systems, but it has one root cause. Find out exactly what’s happening with the mast cells, find a drug to treat that, and I am 100% certain ME is totally curable. But what do I know? I’ve only had the Damned Disease for 21 years.
This next plea goes out to anyone with Ehlers-Danlos in the north of England. As you all know, there are zero EDS specialists in this part of the country and we are all left without care. A north east sufferer is working with her MP to change the situation but needs to hear from patients. Although the article refers to Northumberland, as anyone living in Cumbria knows we often have to traverse the Pennines to see consultants in Newcastle, so will be able to access any services set up in the North East. PLEASE please get in touch with Ronnie Campbell MP and inform him of your condition. If we don’t speak up nothing will change!!!!!!!
I spent a very emotional day on Tuesday bawling my eyes out for absolutely no good reason. I hardly ever cry – there is absolutely no point when you live alone because there is no-one to comfort you or make you a brew when you’re exhausted after your melt down plus it gives me headache. However, I was obviously seriously hormonal and just couldn’t help myself. Pesky peri-menopause has a lot to answer for ;-)