Latest moan from you and me, 2015

Are you just jealous he got in before you Armandii

 

Yeah right...............

 

Ever wish you'd never started something?

 

That's what you get for telling the World you've got a small caterpillar in your pants

( I think Armadii's jealous cuz he's only got a maggot )

 

@Anthony Rogers......As if I'd get involved in such a conversation!! I'm going to go & stroke my asparagus!

 

Oh you are so big!!!

 

Woke up to this damanging article in the telegraph today saying ME is not a chronic illness and can be over come with postivie thinking and exercise.

http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html

This is my response to it i have writen on facebook.

"Im not sharing this article because its good. Im sharing this article because its so damaging for ME patients and I will explain why.

This trial was flawed from the start. There are four different diagnostic criteria for ME/CFS. Two of these criteria include the defining symptom of Post Exertional Malaise (PEM). If you don't suffer from PEM then you don't have ME its as simple as that. Two of the criteria do not include PEM and the one used for the trial, the oxford criteria, does not include Post Exertional Malaise. This leaves the trial massively open to people who have been misdiagnosed with ME and have another illness such as depression or chronic fatigue. We all know the benefits of exercise for depression and chronic fatigue is not the same as chronic fatigue syndrome. Chronic fatigue is a symptom of many illnesses but can also be on its own and can be changed with lifestyle changes.

There is plenty of evidence to show that ME is a neuro-immune illness from scientists and studies all over the world and I will name a few.

You have professor Julia Newtons work up in Newcastle. One of the things she has found is an abnormality of acid production in the muscles of ME patients when these cells are exercised. ME patients can produce up to 20x more acid than that of normal people.



You then have the work from Stanford university and the work from scientists in Japan that shows abnormalities in Brain scans of ME patients. Stanford have found that ME patients have diminished white matter and white matter abnormalities in the right hemisphere.

https://med.stanford.edu/news/all-n...bnormalities-in-chronic-fatigue-patients.html

Japan have found that there is neuroinflammation in the brains of ME patients

http://phoenixrising.me/archives/24936

Then there is the Rituximab trial which has shown that 60% of patients have improved from having this drug. Rituximab is a drug used to treat lymphomas, leukemias and autoimmune diseases like rheumatoid arthritis. Rituximab works by destroying B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. Which guess what you can test me and find i have a higher number of white blood cells than normal but not enough to indicate a major infection or cancer.

http://simmaronresearch.com/2015/07...al-boosts-hopes-for-chronic-fatigue-syndrome/

Then if we are talking about Exercise and ME professor Mark Vanness is the guy for that. His work has shown that aerobic exercise in ME patients creates a huge oxygen deficit in the muscles leading to Post Exertional Malaise. There is a measurable abnormal response and he advocates pacing as the way to improve and being mindful of our heart rates.



The article that has come out today saying lifestyle pacing does not improve ME and that Cognitive behavioural therapy and graded exercise therapy do is so damaging. Graded exercise therapy makes people with ME sicker especially those who are in the severe group which is 25% of sufferers. This group was not included in this research by the way as they are too sick to be. Cognitive behavioural therapy is really useful for anyone struggling to cope with a chronic illness or any illness or those ME patients with a co-morbid mental health illness but it will not make any difference to ME as an illness.

Pacing is what is recommended and is the only thing to help. Living within your energy levels is so important because if you keep getting Post Exertional malaise and you keep pushing your body you will get sicker and sicker. The only reason I have improved so much is i had a good doctor who told me to completely rest at the beginning and I have only managed to improve so much because i am really good at pacing and have over time slowly and slowly increased the amount i can do. The last year or so i have improved so much more because of professor Mark vanness's research because i understand what is going wrong in my body and sticking to anaerobic activities has significantly reduced the amount of PEM i get which allows me to strengthen my body. The illness is still there my pain and symptoms are as strong as ever but my body is stronger and its a tad easier to live with.

As an ME sufferer I'm saddened that this trial is being pushed time and time again in the media as it reinforces all the stigma surrounding the illness and does not help patients in anyway.

But what annoys me the most is I am bloody positive and i am working hard at getting as well as possible but altho I'm positive i also have to be realistic about my energy limits as that is the only way to improve at the moment. Being positive hasn't helped my illness in anyway its not improved it it just means I'm not miserable living with it."

I cant describe the amount of sadness and anger i feel towards this article today. My main concern is anyone newly diagnosed could do themselves long term damage by pushing themselves too soon and too much or they could deal with ignorance and miss understanding from other people because of this article.

 

There are just to many reports, one report will say one thing, then another will come out a say the opposite

 

Not really nearly all articles and reports on CBT and GET being helpful and from the pace trial which is the one mentioned above

All other reports are from research from neurologists, immunologists and scientists showing linked abnormalities pointing to immune system activation following a virus. Lots of different studies by different people finding different abnormalities that link and add up.

What annoys me most about the pace trial reports is they say patients are too scared to do too much because they beleive they will get worse. No we are not to scared we just know the consequences the same was you know the consequences of sticking your hand in boiling hot water for example. Most patients have pushed themselves because its completely natural and so easy to do when you having a good day because you want to make the most out of it. We learn that if we do too much we make ourselves really sick so we try to do stuff without causing that reaction. Its not something thats told to us or taught we learn it because thats how our body responds. Its a simple as that