Can I have hope? :( My latest treatment attempts & failures + Anyone heard of the Wimbledon Clinic?

[Qunk]

Hi all,

I am tempted to write my whole back story but you’ve heard it all before although there are a few variants to the most common stories.

I may write in more detail at some point but as it stands I just have some questions and comments for you if you don’t mind?

(I have also put this post in another community so I apologise for repeating it - I'm not quite sure how this site works fully so feel free to let me know if I shouldn't be copy pasting from community to another...)

Firstly….Can I have hope? Over the last 11 years I have been up and down in my reasoning with how likely I am to get better. I’m back in a slump and wondering if with all of these many thousands writing and hoping and researching without mass positive feedback or results how likely is it that I am the one to get better L Sorry if that sounds depressing but it’s my ‘slump’ talking.

I am currently embarking on numerous ‘projects’ (as I’m sure you are) to get back to health from CFS, severe brain fog, dizziness and ear problems and other ailments etc. etc. etc.

Treatments recently have included:

For a few months I had chiropractic adjustments as I was told my Atlas was out of alignment and that this was the way to get the blood flowing through my brain and ‘cure’ me. I was worse after these months and after far too much money came away with nothing but pains in my neck and back that weren’t there before.

I have also has a consultation at the Breakspear Clinic. It was really nice to have someone pay attention to you for an hour and a half after being treated by the ‘in and out’ doctors on the NHS. I came away slightly hopeful. I have been hesitant to continue treatment however as just the initial tests will leave me broke and after reading more about people’s experiences, whilst there are good and bad comments, nothing seems to be particularly positive in terms of a resolution. Once again, my hope has faltered. Is it worth all that money for potentially negligible improvements?

I also went to a ‘Jaw symmetry’ doctor who’s name I won’t bring up. I paid £120 to fill in a questionnaire and then had a 15 minute appointment with barely any examination where I was told CFS isn’t real and it’s due to removal of teeth and braces and that with 2 years of treatment costing £10,000 plus £4000 for new teeth to fill the spaces would realign my jaw and cure my ‘cfs’ and ear issues. I was hopeful about this radical new treatment before going (and without knowing costs) but the Dr was reluctant to give me much information on the treatment itself past what is mentioned above and whilst I don’t dismiss anything yet I wasn’t willing to somehow obtain £14,000 for such drastic treatment without solid evidence. A rather large online list of testimonials was provided and are accessible to all but I find it hard to believe such claims when they are all siuated on the Dr’s website.

I have also obviously been down the NHS route for 11 years and have recently been to a CFS clinic where they are actually talking about introducing anti-virals as an NHS treatment. Needless to say, my next appointment will be in about 4 months and according to the clinic, within the next 10 years they hope medical professionals will start to believe in CFS as a real illness and more understanding will ensue…..Yay!……

I am also fighting to obtain B12 injections on the NHS for a ‘normal’ level of 247.

My latest discovery is The Wimbledon Clinic of Natural Medicine. I discovered it in one of my fervent, desperate research periods a few months ago, put myself on the waiting list and have an appointment very soon. I have found barely anything about this place online in terms of people’s thoughts and experiences which is obviously not a good thing, and whilst I am dubious again after wasting so much money on dead ends, I may as well fork out the £150 (approx, can’t remember cost) for a consultation. There is nothing about costs for further treatments and whilst they list treatment options online, they are unwilling to discuss what may need to be done and the costs involved before a consultation (which I sort of understand although there would be no harm on letting people know how much everything costs so that the money on a consultation isn’t completely wasted if treatment is too pricey). I am not saying anything negative about this clinic please realise. I will reserve judgment until after I go but I am making others aware of it should it be of interest. It seems on the outset similar to Breakspear but with natural remedies. I will let you know how it goes!

Has anyone heard of or had experiences with the Wimbledon Clinic? I really don’t want to have that terrible sinking post-hope disappointment again but I am slowly becoming accustomed to it.

Does anyone have any comments about any of the above?

Does anyone have any suggestions regarding either the above or my next steps in treatment?

Also, does anyone have any links to believable cure stories to re-install a glimmer of hope in me?

Many thanks for your time!

[Ian123]

Have heard some positives on B12 injection though I gather this will be a lifelong treatment with only the frequency of treatment varying according with blood tests. That this treatment is available for reducing symptoms through the NHS is another benefit that cost benefit criteria have been met.

A suggestion of volunteering for research as your condition will be evaluated more thoroughly than is commonly available.

A definition of cure would be useful in answering your last question as the time frame of those expectations must be at the centre of any comment I feel able to make with a degree of confidence.

[Qunk in reply to Ian123]

Thanks for the reply. Where can you volunteer for research?

[Ian123 in reply to Qunk]

I believe the bio bank are still taking samples blogs.lshtm.ac.uk/news/2013...

This link finds researchers recruiting nhs.uk/Conditions/Chronic-f... at which time decisions on participating or not are a personal decision.

[Hidden]

Hello, I have been diagnosed with ME/CFS/FM for 6 years. It is a long road and remain finding difficulty in accepting this condition and hope and determination is part of what keeps me going. On looking at the Website for Wimbledon Clinic, there is no mention of pricing at all, though probably by e.mail request. I guess it would be expensive and I would delve into the treatments and authenticity of tests and full costs and err on the side of caution. Saying that I would be interested in having the brain measurement test and other tests. Additionally they have a list of what they consider causes ME, which is questionable and clarification may be needed on this, ie what their understanding is. I'll be really interested in hearing about your experience and how it goes.

Asfaras vitamin B injections are concerned, it was recommended on my ME Clinic letter to the GP that I should have these, the GP found my levels to be normal and therefore it wasn't thought necessary, though when I brought this up with the ME/CFS Clinic they explained that it can give people with ME/CFS a boost to have these B12 injections, whether or not the levels are normal. I take vitamin B supplements instead now, as discovered injections can help some, though make no difference with others, and so decided not to try to force the hand of the GP.

I think various tests to see what is going on in the body is really important, as long as they know what they are doing. The right kind of specialism is important. Bafflingly the ME Clinic were helpful in some ways, though bafflingly did not fully understand post exertional fatigue/malaise and that by actually attending was going past limitations for some and there are consequences involved, I also found the clinic were focussing more on persons with milder symptoms rather than acknowledging the different levels of ME/CFS and we were all lumped in together which was frustrating. There was a form of validation and invalidation within these sessions.

I think different things help for different people at different times which are changeable, we are so individual aren't we, saying that we are the same in experiencing the same condition with the variety of complex symptoms that are involved and money is a also key issue in exploring treatments.

I don't normally write such long e.mails.........

Super foods are next on my long list........

Take Care

Alice

[Ravensleigh]

Any update on your situation? July 2016