Thursday, 4 February 2016

Much Maligned and Misunderstood: ME and Stress

This article 'Much Maligned and Misunderstood: ME and Stress' is written by Jenny from a new ME/CFS/Fibromyalgia blog offering free/cheap tips and advice for cash-strapped spoonies.

I have had fluctuating ME/CFS/Fibromyalgia since coming down with Glandular Fever in January 1998. A few years ago I’d react defensively if someone suggested I wasn’t getting better because I was stressed. Most of you can probably understand the background to this – ME (although no longer dismissed as Yuppie Flu) can be easily sidelined into Cognitive Behaviour Therapy, inferring getting better is a case of mind over matter. Our associations with this are that it is aggravating and insulting for people with a crippling neurological/immunological/endocrine condition that is under researched.
However, my defensiveness was more puzzling because at university I had studied Health Psychology and PsychoNeuroImmunology (PNI) and knew that stress can aggravate or enable a wide range of conditions which no-one would suggest are purely psychological. Since my more recent relapse I have taken this into account and readdressed my approach to stress and my ME. I am now taking a provisional perspective that at some point there will be a conventional pharmaceutical treatment for ME (or ME subgroups as I think it is unlikely that we all have the same physical illness). However, for the meantime  lifting as many stressors as possible from my body is likely to enable my body to use more resources to heal itself. I have also been listening to other people’s recovery stories and if there is one overriding theme I’d say it was removing stressors (see the Optimum Health Clinic’s Freedom From ME a film about cfs and Dan Neuffer’s site CFS unravelled if you want to hear some encouraging recovery stories).

By the way, on my site ‘Stress’ is used in a very general sense to include the pressures put on our bodies that exceed our ability to cope with them. For example, viruses, poor diet, emotional strain, work demands, anxious thoughts, low blood sugar, smelly paint, pollution. This is not necessarily the same as ‘suffering from stress’ in a medical sense. Also, I don’t think that eliminating stress is a cure in itself.
I have been trying to take away stressors from all angles: eating more organic food, taking supplements, using homemade shampoo, avoiding stressful situations, meditating, using self hypnosis, trying to promote restful sleep etc. This voyage has been challenging as there are a lot of nutty sounding cure-alls on the internet (see my post on open-minded, intelligent curiosity towards ME healing) but I feel like I’m learning a lot about alternative medicine and different traditions.
For those who remain unconvinced of alternative and integrative approaches for ME/CFS/Fibromyalgia, it may be helpful to take the emotive element out by considering other health conditions and recent research*:

  • Mindfulness-based stress reduction therapy (MBSR)promotes a more rapid recovery of functional T cells capable of being activated by a mitogen with the Th1 phenotype in cancer survivors. In English: Mindfulness meditation helps immune recovery after cancer(Lengacher et al, 2013)
  • MBSR training resulted in a significantly smaller post-stress inflammatory response compared to the control condition, despite equivalent levels of stress hormones. In English: learning Mindfulness meditation skills can reduce inflammation after stressful events (Rosenkranz et al, 2013). I think they are saying that this is relevant to an autoimmune response but I have trouble reading.
  • Yoga reduces fatigue and proinflammatory cytokines(IL-6, TNF-α,  IL-1β) in cancer survivors (Kiecolt-Glaser and others, 2014)

Pic link:

My blog has only been going for a month but I have lots of ideas I’d like to include under the general theme of cheap ways to reduce stress and get better faster. So far I have written about aromatherapy;  yoga nidra; and over doing it writing a blog! I’ve also started a series about improving sleep(lack of quality sleep is usually a major psychological and physiological stressor for people with ME/CFS).
 I'm keen to share free (or almost free) resources because most of us have found ME to be financially devastating on top of all the physical and emotional pressures. I think the site will also keep me focused on finding new approaches to help my recovery. It feels like a purposeful, productive thing to do and that is helping me emotionally. I am also enjoying the Twitter community around ME/CFS/Spoonie blogs (I’m @TweetTipsforME).
My general story is on my website, but in more detail:
I had a severe relapse two years ago. This was very alarming, particularly because I was worse than I had ever been, and for the last 11 years I had worked part-time successfully. I didn't feel like the traditional pacing advice I'd had on the NHS would be enough to get me over this major blip. However, one of my new symptoms was like an acquired dyslexia - it was hard to follow words across the page. This made it really tricky to understand information on the internet (please let me know if you think I’ve misread any of the info I link to*). I found this particularly distressing because I am someone who likes to research things thoroughly.
My partner found information on the Optimum Health Clinic ( and I signed up for their Secrets to Recovery online video course ( £97). This was really good for my situation because the video and mp3 player content didn't require any reading. I learnt a lot from this and also started their nutrition programme. However, having lost my job we couldn't afford to pay for the psychology side of the treatment (the nutritional supplements are expensive but helpful). As my brainfog cleared a bit I supplemented what I'd learnt on Secrets through various free sound and video relaxation resources online which I'm sharing on . I've also been learning about things like aromatherapy.
I aim to write quite briefly on my site and to include sound and video resources to make it accessible for other people having difficulty reading (eventually including audio versions of posts – tips on this are very welcome). My reading is improving, but I still find it hard to access long, chatty blog posts and comments. It would be great to hear what you think of the blog in the comments section or on Twitter.

Contact Jenny: