April 2016 meeting

Further referrals and treatments that group members have found helpful, either NHS or alternative therapies

We met to discuss what was available or what we have tried and found helpful. Thank you to all who came and shared their experiences.

We talked about what was available on the NHS. 

One of our members had been tested for Vitamin D deficiency and found that she was very low. She has to take a high dose initially and then a regular maintenance dose is advised. 

Referral to the Pain Management Clinic at Lancaster Royal Infirmary. Aside from assessing current use of painkillers, there are several pain management options available via the service, including specialised physiotherapy, acupuncture and acupressure and hydrotherapy.  Hiring a TENS machine was mentioned, but NHS-approved TENS machines can also be bought and are not expensive.

We talked also about the possibility of co-morbidities or alternative diagnoses/misdiagnoses - Ehlers Danlos/Hypermobility Syndrome, Lyme Disease, POTS-Postural Orthostatic Tachycardia Syndrome and Fibromyalgia were mentioned, with some of the core symptoms and routes to diagnosis briefly discussed.

We also discussed alternative therapies.

The Emotional Freedom Technique (tapping points on the body and saying positive affirmation statements) was discussed. This is thought to bring some relief from stress and anxiety.

Osteopathy and the Alexander Technique were mentioned, with a warning over one of the Alexander Technique basic positions, for those with neck and back disc or nerve problems. The technique works best for alignment and more effective use of posture and muscle related problems. Discuss with your doctor if you have any conditions affecting the neck, back, joints, tendons or ligaments. 

Shiatsu and Bowen Therapy were mentioned as being helpful by the two members who contributed via telephone and the Round Robin.

We discussed other conditions which can be diagnosed and their management options.

Irlen/Scotopic Sensitivity or Visual Stress Syndrome is based on the theory that some individuals have hypersensitive photoreceptors, visual pathways, and/or brain systems that react inappropriately to some wavelengths of light. If you have a problem with text appearing to move when reading, depth and speed perception, problems with fluorescent light, problems with glare, shiny surfaces and 'busy' patterns, among others, then it could be a visual processing problem, like Irlen. All these could be causing further complications with cognitive function and add to the disabling effects of ME. The tests are private. The tinted lenses vary greatly in price and can be expensive, especially when added to some prescription lenses. The coloured overlays used for reading can be bought more cheaply online.

The closest Irlen Centre is in Bury, but some opticians do basic visual stress testing for dyslexia, which works out cheaper and may be helpful in making your decision whether to opt for more in-depth testing, overlay/lens options and management advice. See  http://www.irlen.org.uk/index.html for further information.

We also discussed the benefit or not of exclusion diets and rotating different foods; using CBD* oil for pain and muscle relaxant properties and using good quality ear-defenders like Peltor or Bilsom, although these can be expensive.

I hope those who came found this helpful and we welcome any input from members who couldn't attend via the round robin or Facebook. 

 

* CBD is one of the active cannabinoids found in cannabis. It’s non-psychoactive/won't get you high and is sold legally for its health benefits. It's sometimes prescribed for people with MS.