Welcome to August and for registered members, the receipt of our feedback questionnaire which we would be very grateful for members to complete. Although this has been provided in paper format, completing this online would really help us out as your record would immediately be saved and stored in a secure location.
There were lots of interactions this month with members sharing advice, offering suggestions or empathising where Facebook members were struggling.
Articles / Blogs
- The article ‘Even “Minor” Infections Can Cause Chronic Fatigue Syndrome (ME/CFS)’ was shared.
- The article ‘Biological underpinnings of chronic fatigue syndrome begin to emerge’ was shared.
- The ME Association article ‘CDC removes CBT and GET as recommended treatments for ME/CFS’ was shared.
- Two articles on Low Dose Naltrexone (LDN) in relation to Fibromyalgia were shared, link 1: link 2.
- The article ‘Anesthesia Recommendations for Chronic Fatigue Syndrome & Myalgic Encephalomyelitis’ was shared.
- A reminder of the listening books was shared, website.
- The article ‘The NICE guideline for CFS/ME is not fit for purpose and needs a complete revision’ was shared which includes a petition to sign if you agree.
- The article ‘Wired to eat – The Best Diet Plan for ME/CFS and Fibromyalgia’.
- The article ‘Why CBT is falling out of favour’ was shared.
- Information about the CEA card was shard. The Card enables a disabled cinema guest to receive a complimentary ticket for someone to go with them when they visit a participating cinema, further information at: website.
- The article ‘Yuppie flu’ an inflammatory disease which blood test could easily diagnose, say scientists was shared: . Similar article also shared.
- Thanks for sharing ‘the wacky races’ picture in the Dalbeattie Woods.
- Quite a few of the Facebook members posted how they have been in a lot of pain during the month. Posts of this nature have been a lot higher than normal with some enquiring if this is weather related. Suggestions included trying to see if there was a trigger to the increased pain, rest, pacing, B12 and lavender oil.
- A little lighthearted relieve was offered by Craig our Chairman who introduced us to the word ‘Quanked’, sounded KWANK’d, which meant ‘Overpowered by fatigue. To have the strength reduced or exhausted, as by labor or exertion; become fatigued; be sleepy.’ Used in a sentence: “After sprunting all weekend, then frooncing to get my chores done, I’m well quanked.” Now who does not have a bewildered smile on their face from reading that sentence Thank you Craig and ‘Grandiloquent Word of the Day’.
- A post on blood tests resulted in a number of responses covering how could tests change from normal to showing deficiencies in such a short timescale to being told tests are normal with no actual results being provided.
- Lavender, cutting out caffeine, magnesium, diazepam, melatonin, vitamin B and Amitriptyline were all discussed and suggested for a post on sleep problems.
- Advice on what to expect when seeing a physio was sought which resulted in some examples of how exercise is still commonly an integral part of treatment plans despite the adverse effects this can bring. One Facebook member explained being wheelchair bound since following GET. There was an equal amount of posts where physios were praised for listening and adapting treatments.
- IBS and diet as discussed in a post by a number of Facebook members.
- PIP and the blue badge scheme had a number of posts.
Please remember if you are interested in helping with the creation of the monthly Facebook blog, please email Kim (Secretary) at: firstname.lastname@example.org . I haven’t had any takers yet
Take care and gentle hugs to you all.