{"id":20729,"date":"2019-05-01T06:41:44","date_gmt":"2019-05-01T06:41:44","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=20729"},"modified":"2019-05-06T05:28:46","modified_gmt":"2019-05-06T05:28:46","slug":"cardiff-woman-with-me-is-fundraising-for-private-brain-photobiomodulation-therapy","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/cardiff-woman-with-me-is-fundraising-for-private-brain-photobiomodulation-therapy\/","title":{"rendered":"Cardiff woman with ME is fundraising for private brain photobiomodulation therapy"},"content":{"rendered":"

Fundraising for brain photobiomodulation therapy<\/strong><\/h2>\n

Jonathan Vaughan has despaired of getting help from his local health service, who are unwilling to even supply home visits in Cardiff for his seriously ill fianc\u00e9e, and has set up a fund raising campaign for a treatment only available privately.<\/h3>\n

Wales online reports:<\/strong><\/p>\n

Since June last year, Natalie Price has spent almost her entire existence inside the four walls of her Cardiff bedroom.<\/p>\n

Her extreme sensitivity to light and sound means she often needs to be in complete darkness wearing noise-reducing earplugs.<\/p>\n

\"\"<\/a>She is so easily exhausted that she is no longer able to have long conversations, read a book or even watch television.<\/p>\n

\u201cThe hardest part of it all is the fact I can only spend around 30 minutes with her every day,\u201d said her fianc\u00e9 Jonathan Vaughan, who is now Natalie\u2019s carer.<\/p>\n

\u201cAny longer than that and she\u2019s overstimulated.<\/p>\n

\u201cShe can only see her friends for about 20 minutes once a month. They will come up to her darkened bedroom and speak to her, but often she can\u2019t reply very much.<\/p>\n

\u201cI\u2019ve basically had to stand by and watch her go from a very active, determined person into someone who can\u2019t even eat a bowl of soup because it requires too much energy in her arms.”\u00a0\u00a0\u00a0 \u2026\u2026.<\/p>\n

After speaking to an ME specialist in England, Jonathan has now set up a GoFundMe page in a bid to get Natalie brain photobiomodulation (bPBM) therapy privately.<\/p>\n

It works by feeding red light directly to the brain which then boosts the neurons\u2019 ability to create energy.<\/p>\n

Jonathan said there is only a 5% chance of Natalie making a full recovery from her illness<\/p>\n

\u201cNatalie is at the moment akin to a plant in a dark room that is unable to photosynthesize as her cells cannot generate energy,\u201d said Jonathan.<\/p>\n

\u201cA treatment like bPBM for Natalie could be like moving that plant outside into the sunshine.<\/p>\n

\u201cThese are treatments that have shown promise in trials. Although bPBM is used more for dementia at the moment, trials regarding ME have shown to increase cognitive ability.<\/p>\n

\u201cTo even get Natalie back to a place where she can watch an episode of something on TV once a day would be miraculous for us.<\/p>\n

\u201cFrankly, she has absolutely no quality of life at the moment and we will do anything to try and claw at least some of it back for her. Her entire life has just stopped.\u201d<\/p>\n

If you would like to donate to Natalie go to www.gofundme.com\/let039s-give-natalie-some-of-her-life-back<\/a><\/p>\n

Read the full Wales online<\/strong> article by Mark Smith, 29 April 2019: ‘My fianc\u00e9e was so active, she loved running and life – now she lives in darkness and near silence’ \u00a0 \u00a0<\/a>Natalie Price, 28, can’t eat or clean herself due to her incurable condition<\/p>\n

Read more about Natalie & Jonathan:<\/strong><\/h3>\n

ME: her life just stopped<\/a><\/p>\n

Mirror, 30 Apr 2019: Woman, 28, goes from keen runner to year in dark room because of severe disorder<\/a><\/p>\n

About Brain photobiomodulation therapy:<\/strong><\/h3>\n

A review of research lists the conditions PBM therapy has been trialled for<\/a>.<\/p>\n

Health rising<\/strong>: Mitochondrial Repair Using Light Therapy?<\/a><\/p>\n

Dr Joseph Mercola<\/a><\/p>\n

American Society for laser medicine<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Fundraising for brain photobiomodulation therapy Jonathan Vaughan has despaired of getting help from his local health service, who are unwilling to even supply home visits in Cardiff for his seriously ill fianc\u00e9e, and has set up a fund raising campaign … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[5012,5011,4686,4687,36],"class_list":["post-20729","post","type-post","status-publish","format-standard","hentry","category-news","tag-bpmb-therapy","tag-brain-photobiomodulation-therapy","tag-jonathan-vaughan","tag-natalie-price","tag-severe-me"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-5ol","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/20729","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/comments?post=20729"}],"version-history":[{"count":5,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/20729\/revisions"}],"predecessor-version":[{"id":20847,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/20729\/revisions\/20847"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=20729"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=20729"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=20729"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}