Firstly, thank you so much for taking the time to read this!
**Update: Initial goal reached! Thank you so much!!! Still a couple of other bits of kit to look at but reaching the main figure as quickly as we did was genuinely amazing thank you all so much**
Now for a little bit of background, and why this has been set up. For the first time in a long while we feel we have some hope in helping Natalie recover, even just a little bit. But we really need your help to get there.
Natalie has severe M.E (Myalgic Encephalomyelitis) and over the last 6 years she has been progressively deteriorating. She has now been bed-bound since June 2018 and her whole life is spent within four walls. She's also fully reliant on others as is unable to cook, clean herself, or even cut her own food. Due to the constant deterioration Nat has been progressively running out of hope, until now.
Having spoken to an M.E specialist we were advised to look into brain photobiomodulation (bPBM) therapy, so we did and it seems very promising. We have therefore set this GoFundMe page up for help in getting the equipment we need to be able to undertake this treatment.
It has until now been used to help treat the affects of dementia, however it's use in many trials has proved very promising for many neurological conditions. M.E is a neurological condition with widespread neuro-inflammation, and has many symptoms because of this. Nat suffers with extreme noise and light sensitivity along with being intolerant to any strong smells such as cleaning detergents and aftershave/perfume. Her bedroom window has needed to be blacked out and she has to have ear-protection of some form at all times. She is unable to read, unable to watch anything on TV and has recently found it is even becoming too hard to listen to an audio-book.
bPBM has the potential to reduce the inflammation in her brain which could drastically improve her cognitive function and as such, significantly improve her quality of life. It's still in a trial phase so we don't know how much of an affect it could have, but for Nat to have the ability to even just watch TV again, if only for just 30 minutes to an hour a day, it could have a palpable and a substantial effect on her quality of life, but we could well see an even more significant improvement.
￼￼￼￼￼ bPBM works by feeding red light directly to the mitochondria in the neurons which then boost their ability to create energy. Natalie is at the moment akin to a plant in a dark room that is unable to photosynthesize as her cells can not generate energy. bPBM for Natalie could be like moving that plant outside into the sunshine.
Please see the link below for a more detailed description of its workings.
We've been battling this for quite some time and have come up against multiple brick walls. When Natalie was first diagnosed the only advice given to her by her GP was to "google it". M.E is completely misunderstood in the NHS and the support is minimal (at best). It is not taught to medical students at university and therefore the treatment can often cause more harm. The NICE guidelines for M.E treatment are currently under review and a parliamentary debate was held in January with a view of removing these treatments as soon as possible from the guidelines but many doctors still only offer these. Nat was put on multiple courses of antidepressants with her doctor labeling her fatigue as being a result of depression and not the other way around and has not been offered any real help that has been of any use what so ever. It was a constant losing battle with any and all remaining hope slowly leeching away and disappearing, until now.
After speaking to the specialist we actually do have some hope again, for the first time in a while. We believe bPBM could be that beacon to help bring Natalie back, to let her have quality of life again, and to let her look to the future with positivity. The only thing standing in our way of that is that technology like this is expensive. We can not express in words here how desperate we are to follow this path of treatment, and how much we need your help to get us there. This same sentiment applies to how we will never be able to fully express our gratitude and thanks for any help you are able to provide.
The sooner we can start the treatment, the sooner all who love her can get their Natalie back.