Hopefully everyone is enjoying the weather we have been having, even the few bad days we have had. Summer is quickly passing by and the nights are slowly drawing darker. I myself am getting ready to head to the sun for 2 weeks so someone else will write September’s blog.
The group on Facebook has had a very active month, with highs, lows and laughter. Even though we have our problems we all like to have a giggle. To be honest, laughter and some humour is good for the soul.
Articles / Blogs
As normal there has been links submitted about different information that we may find helpful to read and for us to keep on top of the latest studies and happenings. Here is a brief out line and links for you to check out if you wish to read them.
Well we started with a link for a booklet you can download for free. It is about resting, which is essential when you have ME/CFS. The link to this booklet is; http://bit.ly/29gzvSk
Asda have now been using new signs for disabled lavatories. The sign has the classic image of a person in a wheelchair, but now also portray a male and female standing as not all illnesses are visible, to read the article here is the link; http://metro.co.uk/2016/08/05/asda-displays-new-disabled-toilet-sign-to-show-that-not-every-disability-is-visible-6048319/
Article re hoax chocolate diet that fooled millions; http://www.cbsnews.com/news/how-the-chocolate-diet-hoax-fooled-millions/
On the 8th of August 2016 was Understanding and Remembrance for severe Myalgic Encephalitis; http://phoenixrising.me/archives/28238
A free e-booklet for supporting Mitochondrial Function in ME/CFS patients. Link for booklet is; http://www.prohealth.com/landing/whitepapers/Interview-with-Dr-Jon-D-Kaiser/index.cfm
A PACE study has some interesting results, check out the link to see this; http://www.meaction.net/2016/08/08/rehmeyer-makes-statisticians-jaws-drop-over-pace/
The next link is about not believing everything you read, here is the link to make your own mind up; http://www.sciencealert.com/this-is-why-a-lot-of-peer-reviewed-research-is-actually-wrong
There have been big steps towards a cure for HIV and other lifelong viral infections, to read the research her is the link; http://www.prohealth.com/library/showarticle.cfm?B1=FACEBOOK&utm_source=facebook&utm_campaign=facebook_article_cfs&libid=29255
If you wish to see which council areas where it is believed named persons have been rolled out. To see which one they are talking about here is the link; http://no2np.org/find-named-persons-rolled-area/
There has been a chronically ill teen reported to children protection by named person as his illness kept him from school. To see full article the link is as follows; http://www.express.co.uk/news/uk/699758/Chronically-ill-teen-reported-child-protection-school-absence
There is a CBT,GET, PACING Report here is the link to research as follows; http://www.meassociation.org.uk/how-you-can-help/introduction-to-our-cbt-get-and-pacing-report/
A tribunal orders release of pace trial data link follows; https://valerieeliotsmith.com/2016/08/16/tribunal-orders-release-of-pace-trial-data-qmul-v-the-ic-and-matthees/
A link about recovering from ME/CFS and Fibromyalgia – The Lerner way; http://www.healthrising.org/blog/2016/08/12/chronic-fatigue-syndrome-fibromyalgia-recovery-lerner/
In response to requests by U.S. patient organizations and advocates, the U.S. Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to its 2014 ME/CFS evidence review. This Addendum downgrades the conclusions on the effectiveness of cognitive behavioral therapy (CBT) and graded exercise therapy (GET), and this has tremendous implications for medical education and treatment recommendations. http://occupyme.net/2016/08/16/ahrq-evidence-review-changes-its-conclusions/
Laura Hillenbrand is a famous writer (she wrote Seabiscuit and Unbroken) who has myalgic encephalomyelitis here is a link to her blog; http://scopeblog.stanford.edu/2016/08/17/laura-hillenbrand-leaving-frailty-behind/
International ME/CFS conference airs research prospects; http://www.stuff.co.nz/national/health/83312267/international-mecfs-conference-airs-exciting-research-prospects
After issues with the PACE trials, it has to reanalysed using the trials original protocol; http://www.healthrising.org/forums/threads/the-pace-trials-big-stumble-uk-tribunal-orders-release-of-pace-data.4776/
There has a study that says CBT/GET shows almost no evidence that it is effective in CFS; http://www.healthrising.org/blog/2016/08/18/federal-report-says-almost-no-evidence-cbtget-work-chronic-fatigue-syndrome-mecfs/
The PACE trial data has come into mainstream press here is the Inews article; https://inews.co.uk/essentials/news/health/tribunal-chronic-fatigue-syndrome-data-released/
It appears that Occupational Therapists are helping people with extreme fatigue here is the link realised by College of Occupational Therapists; http://www.bbc.com/future/story/20160817-the-daily-struggle-of-living-with-extreme-fatigue
Here is a website that contains a catalogue of articles on ME; http://www.margaretwilliams.me/
The following is a programme about a family that moved to Australia in the belief it would help the mothers ME; http://www.bbc.co.uk/iplayer/episode/b071rq9l/wanted-down-under-revisited-series-9-16-oconnor-family
An interesting story that appears on the BBC website that details from a Dr Charles Shepard saying, Immune system activation in depression and the possible role for immunomodulatory drugs the link is; http://www.bbc.co.uk/news/health-37166293
There is an article about a lady who has been living with Fibromyalgia in constant pain and no one believed her, here is the link to her story; http://stv.tv/news/features/1364412-fibromyalgia-no-one-believed-me-when-i-was-living-in-constant-pain/
There is an article about a new video game that Allows players to be shown how it feels to suffer a chronic illness; http://www.mirror.co.uk/tech/experience-what-its-like-suffer-8621744
A Scottish based scientist who was granted almost 5 million pounds from Science Foundation Ireland is now under investigation amids allegations that his research has been falsified and duplicated; http://www.irishtimes.com/news/science/irish-funded-scientist-under-investigation-over-his-research-1.2771359
Some of the memes that have been posted
There has been many topics discussed in the group from who is the best doctor in the area for Fibromyalgia as the person feels unsatisfied with the treatment they receive to someone cutting their own hair and slipping to be left with a bald patch. We as a group suffer from discrimination from people about our illness. One person tells how a family member said to take certain vitamins that would make them better. Everyone has an idea to help but really this kind of attitude doesn’t help. There were 2 polls taken of the group, 1 was for people with ME/CFS and the other was for people with Fibromyalgia. This was to understand how people were diagnosed, as this member was meeting with the Stewartry Locality Manager to discuss specialists in our area. A question was asked if people knitted and if it hurt their hands. Quite a few members felt that it did hurt but there are gloves that helped. A member of the group who was suffering from a spell of exhaustion and asked if any of the member’s had any ideas how to cope with this without it taking over everything in there life. Support was given.
Well I will close for now and I hope everyone has a wonderful September and that we can cope with what is put in front of us.
Remember folks we meet at the midsteeple the 1st Thursday of the month except January. Come and have a coffee and a chat and I can promise we don’t bite and we dont sit round crying hehe. Its good to have a giggle and a conversation with people that understand exactly what you are going through.
Well bye for now and I will blog again in October.