An update from me, about me!
I realise I have not posted for a while or been very active on social media. There are a number of small reasons, however I do tend to go through natural phases and I have been concentrating on a few other ventures. I had also put a lot of intensive effort into is website to generate all the information as quickly as possible to give the best chance at growing an audience and to make sure there was comprehensive information for everyone on most subjects.
Medically my Vitamin D seems to be in normal ranges although I have not noticed much difference personally. I’m still on testosterone replacement therapy although the last blood test showed no improvement in my testosterone levels but instead my PSA was elevated and was about double what it should be. I attended a Urology consultation which was an experience, the doctor basically opened with “we need to confirm you have Prostate Cancer,” took no medical history, took no medication list, asked no questions about any other things that could elevate PSA, prescribed me a drug incompatible with my current medication and scheduled a follow up to discuss my next test results for before the test itself. So all in all not very successful and far bellow even the average standard I expect from the NHS nowadays. So its now down to my opinion that its a symptom of Chronic Prostatitis versus the Consultants opinion that its Prostate Cancer, let’s hope I’m correct!
Also becoming problematic is arthritis in my knees, I’ve noticed pain and inflammation while up to now they have just been a bit noisy. I have put on a little weight over the past year or two so it makes sense to be honest. Otherwise I’ve managed to reduce my morphine to about 50% of its peak which is good however I’ve noticed far more problematic shoulders of late and I’m going through Voltarol Emugel P like its water.
Otherwise I’m still here, I haven’t had to do much maintenance of the website as the information is still very current and applicable. I’m also in the process of being prescribed the only drug on this website I haven’t been on so I guess I will be able to provide a personal perspective on it soon, its Gabapentin by the way. I’m still contactable through social media or the contact form so feel free to get in touch, I’m quite bad at monitoring comments at the moment as real comments just get lost in spam I’m afraid. If you do require some response please contact me through social media.
I will however wrap this up as its meant to be a short update and I want to get this online before I get myself distracted with something and forget completely only to find it in my drafts once its a little out of date. I really really hope the site is useful for everyone, I’ve put a lot of effort into it and have tried to cover all subjects relevant for sufferers in the UK.
Dr Lipkin finds more evidence and believes that “the primary cause of CFS/ME is likely to be an infectious agent”
I have come across an interesting article from Phoenix Rising about Dr Ian Lipkin who has been talking about the first results from the world’s largest ever biomedical ME/CFS study. Dr Ian Lipkin is a physician-scientist and Professor of Epidemiology at both the Mailman School of Public Health, and the College of Physicians and Surgeons at Columbia University. He is also the Director of the Center for Infection and Immunity.
The study is looking for any pathogen (viral, bacterial, fungal or parasitic) to see if a chronic infection could explain ME/CFS. So far there is no clear sign of viruses but they have found strong evidence for immune overstimulation, both in blood plasma and in cerebro spinal fluid. They are now working hard to try and identify what could be causing these abnormalities.
As most people know Fibromyalgia is very similar to CFS/ME and some in the medical community believe they are the same thing. There is also evidence to suggest people diagnosed with one of these conditions may find their symptoms fit the definition of the other condition more closely. This does not particularly help in our understanding of the conditions and some patients liken the onset of the condition to “catching a virus” or claim that the condition started after a severe viral infection similar to Influenza (Flu).
Dr Ian Lipkin does (thankfully) seem to be looking into these possibilities and has been for some time. In 1999 he published his first paper on CFS and also made comments that would re-assure most patients with the condition. He said that: “there was a very strong sentiment in some portions of the scientific and clinical communities – not always and not everywhere – but in some portions of the community, that this was a psychological illness. What I said was that based on our findings we had very strong evidence that people with Chronic Fatigue Syndrome were truly ill with a physical illness and they deserved a “Deep Dive” to find out why they were ill.” More recently he has said that: “I still believe the primary cause is likely to be an infectious agent.”
I know many people will welcome such research and we all hope for more research and discoveries when it comes to Fibromyalgia/ME/CFS so we can all be believed, but more importantly, get some relief.