Well July 2016 has been a busy month for the members of the group. There has been a wide range of topics and comments to ask for help or to give advice to one another. Even pictures to have a giggle.
Articles / Blogs
‘The Exercise Intolerance in POTS, ME/CFS and Fibromyalgia Explained’ paper was posted, it is a lengthly paper but worth the read; the paper can be found at http://www.healthrising.org/blog/2016/07/04/exercise-intolerance-fibromyalgia-chronic-fatigue-pots-explained/
There was an article posted on how over $1 million has been spent fighting PACE trial data release. The article is about how no one will get to see raw detail of the PACE trial; visit http://www.healthrising.org/forums/threads/over-1-million-spent-fighting-pace-trial-data-release.4622/to access the article.
An article was posted about a lady called Lesley Scott that represents a charity providing support services for families with children suffering from ME; visit http://no2np.org/story/lesley-scott/ to read the article.
An article was posted on a study about a six year study of abnormal brain changes in chronic fatigue syndrome patients; visit https://meaustralia.net/2016/07/12/six-year-study-of-abnormal-brain-changes-in-chronic-fatigue-syndrome-patients/ to access the article.
An article was posted about Dr David Tuller who had provided an overview and update of his work criticizing the PACE trial; visit http://www.meaction.net/2016/07/13/tuller-slams-terrible-pace-in-podcast/ to read the full article.
Many of us are facing the change from DLA to PIP and a member shared a post from the Facebook site https://www.facebook.com/ME-Association-171411469583186/?fref=nf which included comments from Dr Shepherd. One of our members reported having their PIP assessment completed at home recently while quite a number of members routinely report how stressful the whole PIP process is.
An article was posted about the recent summary findings in ME-cf. research; visit https://drive.google.com/file/d/0B_Dn3IXWlI9fTGdpSjkzcmtWRUU/view?pref=2&pli=1 to read the article which may be useful to show others.
An article was posted on how we need to talk about the bad science that is being funded; visit http://www.sciencealert.com/we-need-to-talk-about-the-bad-science-being-funded to read this article and come to your own conclusion.
An article was posted from australia about adopting the international Consensus Criteria for ME; visit https://meaustralia.net/2016/03/29/why-me-and-cfs-instead-of-mecfs/ to read the article and come to your own conclusion.
An article entitled ‘Breakthrough In Fibromyalgia Research: Pain Is In Your Skin, Not Your Head’ was posted; it is a very interesting read and can be found at http://www.medicaldaily.com/breakthrough-fibromyalgia-research-pain-your-skin-not-your-head-246925#.V5efs5HSfhg.facebook
There is fresh evidence that points to causes and possible treatments for cfs; to see this article go to http://www.meassociation.org.uk/2016/07/fresh-evidence-points-to-a-cause-and-possible-treatments-for-chronic-fatigue-syndrome-the-pharmaceutical-journal-15-july-2016/ for an interesting read.
As many of us know we can tend to over do things ending up having to have a nap as our body wont go any further; there was a blog posted about swapping afternoon naps for regular resting at https://laurachamberlain.co.uk/2016/07/08/the-benefits-of-rest-in-mecfs/.
A blog was posted about the difference between Chronic Fatigue and just being tired; to read it go to http://themighty.com/2016/07/comic-strip-that-explains-chronic-fatigue-syndrome/
What have our members been up to, including support to them
Many of our members have issues with sleeping but what doesn’t help is when there are outside factors to wake us up, like one of our members who sought advice on how to distract wildlife from the windows which including what to put on widows to scare the birds away. Someone posted about working and coping with their personal life; its a hard situation to be in. One member made a comment about there activities in the kitchen; I have never made sauerkraut myself but the picture did look yummy. A member was talking about their experiences with doctors and meds and the frustrations we sometimes face during our illness; it’s a hard experience. A member shared with us about their weekend away; by the pictures it looked like they had an amazing time although they did have worries about how they would feel the days to follow. A member posted about almost passing out with exhaustion and having a really bad day and not being able to get out of bed and seeking advice in seeing if it came from their medication. A member posted about having squeezing chest pain and seeking advice if it was part of our illness, which other members reported also having. Another member posted about chronic headaches seeking advice about how to deal with them. As we know excersise can be a problem with a member commenting about being able to do some excersise and how their body was letting them with advice being given about pacing themselves. A common theme is how stress can affect our illness, a member reached out to get it off their mind and chest and get some advice. As we all know we have many bad days. It can be a struggle to get through, advice was sought on how others managed to get through our bad days. Advice was saught on deponit10 patches and members shared their experience of these.
Numerous members commented and offered support.
Chance to Speak
Safe spaces for the voices of disabled people to be heard: The introduction of health and social care integration promises important opportunities for people who use services and third sector organisations to have an input to the development of health and social care integration strategy and delivery. Given that the purpose of Health and Social Care Integration (HSCI) is to improve the health and well-being of people who use services, it stands to reason that it is they who are best placed to know what works and what does not, and to gauge progress towards that goal. Inclusion Scotland have partnered with Third Sector Dumfries and Galloway and DG Voice to look at the engagement of disabled people within HSCI in Dumfries and Galloway. In particular in relation to disabled people having meaningful input in service re-design and to help ensure that the potential for mutually positive experiences and outcomes is realised. Session dates covering 27/7/16 to 5/8/16 were posted. For more information, email firstname.lastname@example.org
It is the time of year many of us plan and go on holiday. Those of us that use a wheelchair find it difficult going to the beach, as the wheelchair gets stuck in the sand. Some places have special paths so a wheelchair user can go to the beach. It would be wonderfull if there were more paths like this.
There is a picture posted that was good to post to our own page. It was about having a chronic illness and for people not to be surprised about things we are unable to do. For example don’t be surprised if I don’t answer the phone or reply to messages straight away. It’s a good thing to share as many of our friends and family don’t understand our limitations.
There was a picture posted about having a good thyroid doctor; go to www.thyroidnation.com for information about thyroid issues.
There was a picture posted about what to look for in relation to Magnesium levels as its a thing to look out for as not everything can be down to ME CFS FM; visit www.thyroidnation.com for more information.
Some pictures were shared on how to describe our illness.
On the Loose Women show of 22nd of July, Michael Crawford explained that he has M.E. and how members feel it is about time more famous people come forward and bring attention to the cause.
It was annonced that the next meeting in Dumfries is on the 4th of August at the usual time (1pm-3pm) at the mid-steeple. Our meetings are always the first thursday of the month except January. Come and join us on Facebook if you can’t attend our meetings.
Well the month of July has certainly been a busy month for the members of the Facebook page. A lot of information passed on and a lot of support and guidance has helped each other. Also a couple of giggles. We pass on happy things that are happening in our lives to.