cfs/me clinic

RE: cfs/me clinic

When I went I had to fill in a questionarre before i went all about how i was feeling how I coped what I wanted and did not want. I had an hour interview with an occupational therapist we worked out what I was doing right what i needed to change. I had to fill in a diary between sessions looking at my sleep and daily activity. This helped the therapist to work with me in the next session.

I know now that they have set up a six week group to look at food, exercise, stress and so on.

I was referred as I had a relapse 18 mnths ago so for me it was fine tuning hope this helps. Please PM me if you need any more help.

RE: cfs/me clinic

hi there,

yes that has been very helpful thank u. i now have some insight and know what type of thing to expect.

the thing that concerns me, though, is if i am having a bad day how i will cope even with simple things like a questionnaire as i have 'brain fog' and just don't function properly when i am in pain? i would probably be better rescheduling the appointment if i was bad on the day.

nice to meet you, hope you are ok, thank u for your advice and taking the time to help.

love dawnymariexxx

[sm=1syellow1.gif][sm=1syellow1.gif][sm=1syellow1.gif][sm=1syellow1.gif][sm=1syellow1.gif][sm=1syellow1.gif]

RE: cfs/me clinic

Dawnymarie glad to be of help the one thing the clinic will understand if you cannot fill the form do what you can dont canel appointment go as it is the start of getting better.

RE: cfs/me clinic

Maybe SA could give some pointers on the type of questions on questionnaire?
If other areas use a similar one, then folks could have a think & note down some potential answers down.

I'm thinking along the lines of;

When did it start?
Was it gradual or sudden?
Is there anything that you think may have triggered or contributed to it?
i.e. An infection that you never really recovered from, foreign travel, stressful event, etc.
How much are you able to carry outday to day tasks?
Any known allergies, hypersensitivities or intolerances?

Allthe evidence suggests that depression is a result (secondary problem) of ME/CFS and not the otherway around. Unfortunately there isa strong denial of this & stubborness to acknowledge this established fact within the NHS.

If the questionnaire is mainlyaimed atdepression and psychologicalproblems, then please do you're best to assert yourself. I will support with references if need be. It's an established organic disease and don't let anyone patronise you andtry and tell you - 'It's all in your head.'

It sounds like Somerset Angel has been lucky with her local NHS services as they are at least considering food as a possible factor, although I wonder in whatcontext that they are considering it.

A large part of the problem withorthodox medicine being unwilling to accept ME/CFS as anything other than a pschological problem can be placed solely at the door of Prof. Simon Wessely -apsychiatristthat wrote a book on the subject.
His basic premise was that ME/CFS was the same as a previous condition called neurasthenia [link= http://en.wikipedia.org/wiki/Neurasthenia ]http://en.wikipedia.org/wiki/Neurasthenia[/link]- (You'll notice that it was defined in 1869) and at the time, because they had no evidence otherwise, it was deemed to be a psychological problem. He seems to be working on the grand assumption that neurasthenia was then conculded to be a psychological problem, therefore ME/CFS must be today. This is despite all the evidence to the contrary.
It gets even more farcical, when you learn that Wessley and some of his pyschiatric colleagues actually walked out on a UK government working group (set up to look at ME/CFS) when it looked like the outcome wasn't going their way. The professional equivalent of spitting out their dummies - methinks. I see that more recently he's been putting his efforts into doing a simillar number onGulf War Syndrome. 🙁

Oh, BTW - the graded exercise programme that is still being used across the UK NHS, that has long since been dismissed pretty much everywhere else in the world - That's aimed at depression too! Here's a classical example of one of those doctors still persuing that avenue - entitled an Open Letter to Dr Nye - [link= http://www.sayer.abel.co.uk/MES-Nnye.html ]http://www.sayer.abel.co.uk/MES-Nnye.html[/link]

After accompanying one of my patients to a consultation with Dr Nye - it wouldn't been seen as professional to write my own opinion here and I don't think that the expletive filter would cope withthe patients opinion.

Essentially, IMHO, if they arenot considering;

• Foods in the context of allergies, hypersensitivities & intolerances,
• Poor lymphatic drainage,
• Possible underlying autoimmune disease or
• possible underlying chronic infection, be it bacterial, viral or parasitic,

then it's likely that you're wasting your time and the only thing that can be achieved is that you will not have - 'Non Compliant' written on your medical record.The implications of that I suspect you may be familiar with. That said it's worth persuing to the point to which you feel comfortable with, as there is a chance that they may do tests that could turn up some useful information. i.e. raised eosinophils.

SuspectI've ranted enough for now - Andrew.

RE: cfs/me clinic

hi andrew,

thank you very much for taking the time to write such an informative reply to my question.

dosn't sound good for me if i do get referred successfully to any clinics does it. dr nye would be at the latest one that my consultant has tried to refer me to.

my husband read some literature about wessley, not good reading is it and i don't know an awful lot about him.

i am very pleased to say that i have never suffered any form of depression up to now with cfs/me in fact i am very positive and optimistic, though it would be understandable if someone suffered from depression secondary to cfs/me. when i saw the occupational health dr he tried to go down that path but i think he soon understood my message that i was anything but. yes there are times with cfs/me that i can get upset and frustrated but that is only to be expected especially when you come across sceptical people and those who try to tell you that it is psychosomatic. once i had my diagnosis i then found it alot easier, however still hard work, to take sceptical and unknowledgable people with a pinch of salt.

it was me who suggested seeing a specialist to my consultant as he was unsure how to plan care or advise me on living with this illness and working towards getting better. now i wonder if i did the right thing?

i will try anything to get better as i have had this since march(not a long time i know compared to other fellow sufferers)and don't seem to be improving at all, infact at times it feels worse. but i wouldn't like to think that i would have to travel miles in order to be implied that my symptoms are 'all in my head'. one of my consultants said to me ' the most important thing that you must remember is that this is NOT all in your head'. he has known me for a good while as i was a nurse on the unit he works on,and knows me prior to getting cfs/me.

i have been given the guidance literature that is used at this particular clinic that i have been referred to by an ex patient (also a very genuine person) and it focuses on the body clock, some of it makes sense but there is no mention of immune system or infection or virus or anything that may have caused it and what would be done to rectify that?

feel in limbo really with no plan of care, my gp is leaving it in the hands of my consultant at the hospital as he does not know how to advice me or what support to offer me. thank goodness i have a fabulous husband and daughter, mum and friends who offer me support and understanding and believe in my cfs/me being an actual illness and not 'all in my head'.

will keep you updated to what progresses,

once again, thank you for your reply,

love dawnymariexxx :):):)

RE: cfs/me clinic

hi andrew,

just read the letter to dr nye, interesting isn't it.

i had seen those job specifications whilst browsing the internet for help and advice re cfs/me as i seem to be having to diy my care and treat myself. i couldn't believe what i was reading and found it quite bizarre that they could think such things about me and other me/cfs sufferers. my husband gets so passionate and annoyed when he reads things like this, he knows me and those descriptions of a person with cfs/me do not in any way describe me, as i am certain they do not describe any other cfs/me sufferer.

i agree also that an apology does not appear to have been made for the majority of descriptors?

is there anywhere that you can go or anywhere online that can assist with help and support for this illness?

seems very unfair to be treated in this way.

thank you once again,

love dawnymariexxx:D:):D

RE: cfs/me clinic

In reply to you both, I had to fight when I was first diagnosed 15years ago that I was not suffering depression I never went on any form of treatment for depression although it is said to help with ME /CFS. I was referred to the clinic in Wells when I had a relapse 18 mnths ago. The thing I found most helpful was talking to the OT about what I was doing right and the areas I need to take care of. I took my eye off the ball and overode feelings of tiredness due to family situations as these dont make allowances for having ME.

I found the activity sleep diary very helpful as it helped to see days I had restless sleep and if I had a good balance of high med low activities duriow to build up during the day. They were helpful in how to build activity up.

As for the questionairre it was about you and your ME/CFS how you were coping what you were able not able to do levels of concentration. If you could drive walk and so on. What I found good was they asked what you wanted from the clinic and most important what you di not want. For me it was so good to have someone to talk to who was prepared to help me in the way I needed help and then to see how I could plan my life round my condiditon. Hope this helps

RE: cfs/me clinic

hi somerset angel,

yes that is very helpful, thank you. and i am glad that you are now able to cope and live with cfs/me much better than before. well done. hope that i can be successful too.

love dawnymariexxx

[sm=1syellow1.gif][sm=1syellow1.gif][sm=1syellow1.gif][sm=1syellow1.gif][sm=1syellow1.gif][sm=1syellow1.gif]

RE: cfs/me clinic

I am sure you will my daughter gave a me a compliment having just being diagnosed herself. She said it was not as bad as the possible stroke that had been suggested and she had seen her mum getting on with her life despite having ME she felt I was a good role model in coping.

I found in the begining homeopothy very good to sort out allergies bach flower remidies especially olive and rescue rememdy also shiatu massage. Meditation and visulisation. the best was whe I was attuned to Reiki. Aviod stress especially mental stress.

If you have to rise to an occasion and use more energy than you have remember you will be borrowing from the next day and will have to take rest so you dont bust and burn.

RE: cfs/me clinic

ORIGINAL: Somerset Angel

I found in the begining ........... Meditation and visulisation. the best was whe I was attuned to Reiki. Aviod stress especially mental stress.

I agree with you SA........ (as I have said in another post) ......... the best thing to help with m.e. (for me) was being Reiki attuned......... giving me the 'power' over my own pain ... to be able to have some healing in my own hands, at any time of day or night. along with meditation practice this just gives you some control over this horrible condition (m.e./c.f.s.)

avoiding stress is a must in our self-healing journey

some very good advice here in these pages

hope you all manage to attain good health

RE: cfs/me clinic

Hi all!

Dawnymarie: have you ever heard of DrNatura's products? I have finished the entire program and I feel much much better now. It is an internal cleansing program, works better than anything that I had tried before (artificial or natural), and costs less than visiting all the doctors . You can find everything on the [link= http://drnatura.eu/ ]http://drnatura.eu[/link] page, there is even a topic for CFS [link= http://www.drnatura.co.uk/?i=fat ]http://www.drnatura.co.uk/?i=fat[/link] . I hope I could help, please feel free to ask if you have any questions.
Best wishes,

Staylor

RE: cfs/me clinic

:)hiya everyone,

thank you very much for your continued support and advice.

i do agree very much that meditation and avoiding stress is beneficial and i have begun meditating and relaxing daily. i love the wonderful feeling of peace and calm.

i shall take look at the website that is linked, thank you.

so nice to know that other people understand.

love dawnymariexxx

😀

RE: cfs/me clinic

Dawnymarie,
I'm looking forward to hear news from you!
🙂

RE: cfs/me clinic

hi there,

i will keep you updated, as of yet i have not recieved an appointment.

probably be in new year?

bye for now,

love dawnymariexxx

🙂

RE: cfs/me clinic

hi there everyone,

no appointment as of yet. probably after christmas now hey?

will let you know how i go.

love dawnymariexxx:)

RE: cfs/me clinic

hi everyone,

still no appt? think snail pace is the speed that my local hospital works at? oh well keep smiling and stay positive:)

love dawnymariexxx:)

RE: cfs/me clinic

hi everyone,

well, good news, i have an appt for cfs/me clinic at end of january:)

really pleased as now i will get some sort of careplan and support, which is what i really need. i want to recover so desperately:)

will let you know how it goes,

love dawnymariexxx

RE: cfs/me clinic

DawnMarie & Staylor - if your interested in reading about the Dr Ntura stuff - we have a very helpful blog here in HP! [link= http://www.healthypages.net/forum/tm.asp?m=313401&mpage=1&key=&#313401 ]http://www.healthypages.net/forum/tm.asp?m=313401&mpage=1&key=&#313401[/link]

i hope that your results come out positive dawnymaire, and i hope you recover quickly!

Ada