What was your experience at the doctor on diagnosis?

[Regalbirdy]

Hi all,

I was diagnosed with CFS in 2015 - and still have it. I remember maintaining at the time of diagnosis that my health issues stemmed from a physical cause (in my case I suspect the CFS was triggered by having Coeliac Disease), yet all the doctors at my local practice could offer me was a mental health referral for GET and CBT. Has anyone else experienced this? Or anything similar?

I ask because I have been given the opportunity to write a layperson report (sadly no pay is involved 🙁) to try to get my local NHS CCG to do a review of ME/CFS.

Is anyone else also finding that they are having to educate their doctor on their condition?

I would very much like to see the treatments and knowledge improve in my area of the UK ie. the Midlands (and I’m guilty of self interest here...!), so anything you could contribute would be very helpful/useful.

Thanks in advance 🙂

[Hidden]

Hi Regalbirdy. I had my diagnosis given by a specialist who believes ME is caused by a viral infection, (what I now suspect as my first acute attack of ME happened about 15 years ago and at the time it was put down to a mystery viral illness as my bloods were all 'up the left' showing very obvious signs of infection). He is the only person I have met that doesn't go down the metal health route although advise attention to good mental health practices as important in recovery.

I did a trial with an antiretroviral drug and had to stop early due to unbearable side-effects. I have improved dramatically since that time although still have a long way to go.

Unfortunately the NHS lags behind the likes of Canada although their census model is used in UK helping to highlight the wide impacts of ME on our well being at all levels:

me-pedia.org/wiki/Canadian_...

I don't have to educate my Dr as I do not see him for ME, there is nothing other than maybe a nootropic he can offer and he is reluctant to do so. Other than that I find no need to meet with him - I have RLS so can't take antidepressants which are often prescribed and I have no use for CBT.

[Regalbirdy in reply to Hidden]

Raffs,

Thank you so much for your reply and your help. It sounds like you were diagnosed by people who had an idea of what they were doing. I’m glad that has been your experience - it’s good to hear that.

The NICE guidelines freely admit that expert support is quite variable, depending on what part of the country you live in. In my area it seems to be pretty non existent - and I am trying to do my ‘bit’ to improve that, whilst I have sufficient energy to work on it. I think that the Canadian criteria is fairly respectable in its scope - I hope it gets more universally adopted.

[Hidden in reply to Regalbirdy]

Oh yeah - Dr William Weir certainly knows his stuff and I am very grateful to have seen him.

When you look into the nonsense that the exercise programmes are and that CBT is of limited effect and should only be used to treat the problems caused by M.E. as opposed to treating M.E. with CBT. The NHS is still too mentally focused imho.

[Regalbirdy in reply to Hidden]

I couldn’t agree more!

[ALKT]

their are a lot of science papers about m e also papers about the complete farce of a trial called pace you can access via the science for m e . website if you search around a little I am sure you can get all the references to various studies etc . best of luck with your attempts to deal with a ccg they all seem to be gung ho on cheap cbt for everything .

[Regalbirdy in reply to ALKT]

Thanks for your reply.

The PACE Trial is one crazy piece of research. One research paper I looked at arguing against it, mentions that some of the volunteers may not have had ME/CFS at all. Apart from the several conflicts of interest by the authors; they may have also used volunteers with Chronic fatigue from causes such as depression, rather than actual Chronic Fatigue Syndrome - thereby skewing the recovery rates (depressed people respond well to exercise!).

[Starry]

My diagnosing GP did not comment on her beliefs. I had a terrible experience with local neurology in hospital. However the OH led service here only offers Pacing and Meditation not CBT or GET so I believe it has at least accepted the evidence that they are ineffective /harmful. Neighbouring Suffolk employs a p.t. medical prescribing consultant for moderate and severe sufferers.

I learned more from global fb l, this group and reading nih research abstracts than my OH.

[PaperSky]

I have definitely experienced this every-time I go in my GP puts my anti-depressant dose up. My bloods come back as having abnormally high serum c reactive protein levels (inflammation marker) but my GP just said it's not clinically significant despite the fact that I ache all the time.

[Karenlynne]

Hi regalbirdt. Sorry for the late response but I've been too unwell before. Although I have an excellent dr who specializes in m.e I wasn't sure about the rest of the gp practice. I bought a book on line ( bedridden for 6 year) that was about a doctor who suffered from m.e and her story. It's a short book and I gave it to the practice knowing that they'd be more likely to read a brief book about one of their own. You could always try the same thing if you think it would help open their eyes to the stark reality of living?? with this dreadful illness. Karelynne

[peege]

My GP did loads of blood tests in April 2016 for gger extreme tiredness I'd been living with ie two weeks stranded on the sofa after a weekend spent with small grandchildren. All tests were negative according to GP & he diagnosed CFS, chronic fatigue syndrome. His advice: "there's no cure, you have to learn to manage it". I didn't really understand what he was talking about so looked it up when I got home. I thought he was talking out of his bottom & refused to believe it was possible having always been very fit & active, holding down high stress jobs for many years (probably part of the problem I realise now).

Anyway, no help from GP, admittedly I've never been back about it. Since late 2017 I realised I did have CFS, read up about it, tried to explain to my kids why I was having to pace my support with the little ones (took them a long time to get it).

I find information on Dr Sarah Myhill's website suits me, if I could afford it I'd go for a consultation. Instead I've looked at her Fatigue Pack of supplements, I decided to try each one individually to see if one worked, if none then I would have tried a combination. Amazingly the first one I tried I felt a difference in energy levels within 3 weeks. Ubiquinol is what I take daily.