fund my healing journey …
Help Fund My Healing via ME Treatment
I have severe ME/CFS. I’ve been ill since 1984, firstly mild, then moderate, and now severe. Five years ago I started to get much sicker and I am now housebound and often bedbound. Although that said, I simply go from the bed to the settee and need to be lay flat as much as possible. So in reality I am also bedbound.
I applied to my GP to be referred to the Yorkshire Fatigue Clinic for specialist ME treatment, which as a UK citizen and because my husband is a UK tax payer, I am entitled to. My GP willingly approved it, considering I was so sick and he couldn’t help me. But, when it went to the clinical commissioning group for approval it was refused on the grounds that they felt I could be treated in house by the Familiar Faces team. A year later and I am sicker and in the process of being discharged from my Familiar Faces team, who are not ME specialists anyway, and have not helped me one bit.
However, to be accepted by the Yorkshire Fatigue clinic I need my CCG to approve it or I have to self fund, which means pay for it myself.
I can appeal the previous decision, which I may well do now that I have evidence that I am not getting the specialist treatment I need or am entitled to. But this takes time and energy that I don’t have.
So, I have decided to start with I am going down the pay myself route. The irony is, I don’t work and I don’t have an income. I can’t claim benefit because my husband earns too much. So I am lacking vital resources of energy to appeal and money to pay. We are not rich, we are two people living on one income and it is difficult.
This is where I am hoping the kindness, empathy and love of others will help out.
Please, please, donate what you can using the form at the bottom of the page or on any corresponding individual page of the plan.
I will add regularly the costs I’ve outlaid and the upcoming costs below.
If you have any further questions about this please do not hesitate to contact me using the ‘contact (ME treatment …)’ form.
Below, I will explain a little about the treatment plan and corresponding costs.
The Treatment Plan & Costs
The treatment plan is prescribed on personal basis, especially for some at the severe end of ME. I won’t be expected to join any group sessions, in the beginning and maybe not ever. I won’t travel to appointments, everything will be done via zoom , telephone, or Skype. I also won’t need the medical assessment because I have a diagnosis of severe ME, but I may need further investigations that I may have to pay for if my GP refuses to do them under the NHS remit.
See[sg_popup id=”6155″ event=”inherit”]price list …[/sg_popup]
The STEP Programme
The programme I will be doing with them is known as The STEP Programme (see below for information taken from the Yorkshire Fatigue Clinic website), and is used in conjunction with their understanding of ME/CFS using the dysregulation model.
The STEP Programme focuses on helping you to understand the things that can affect your symptoms. It then takes you through stages of stabilising and gradually increasing energy and activity levels. A qualified therapist will assess your needs and how you can use the programme to optimise your recovery.
I sincerely hope to understand my illness better and accept my limitations more too. It’s been a very long time coming considering I first got ill in 1984.
My Healing Journey …
I know this title smacks of toxic positivity but I have no idea what else to call it and I do want to document my journey. So for now, this is the category and title I will use to document, and for you to follow, this journey through.
Just to add, it’s not such a far fetched title as I do have hope that one day I will heal and that journey will have to start somewhere, and so it could be here. I also believe that if I am registered with a specialist ME clinic then I will be able to avail myself of targeted medicines and treatments as and when they become available.
That said, I want you to know that right now, in 2021, I do not believe there is a cure for ME and I know that I cannot heal from ME right now. Presently, scientific expertise interest regarding ME is very lacking but the knowledge of a few dedicated and sincere scientists is progressing exponentially and so I do have hope that the future may hold healing for us all.
Nevertheless, I can work with my body and for myself, to consolidate where I am right now, which will be as good as healing because I am consistently making myself sicker and it needs to stop before I kill my self. This is not a suicide proclamation, this is down to pushing my body so much that it can no longer go on, which sadly does happen.
KAROSHI: (in Japan) death caused by overwork or job-related exhaustion (in the case of ME, our bodies are so shot at that we push it over the edge and die)
If you can help in anyway please go to the corresponding tab to donate, it will be very much appreciated and gladly received.