ASD and CFS /ME - private rheumatologist

They don't offer much for ME/CFS. 

I've been diagnosed with ME/CFS since the early 2000s. They pretty much just leave it; there is 'nothing they can do.' I've had way too much CBT for both apparently helping with severe depression and ME; CBT didn't work too well for me. I suppose maybe I learnt one or two things from it that I use today, but mostly it didn't work for mental stuff or coping with M.E. Although I'm fairly certain (it could be paranoia) that my doctors see my ME as a mental problem and maybe now see it as autism burn out? except it's been a long burnout that I never fully recovered from?

but on top of that, because of my heart condition, it's hard to know what's what, I guess. So maybe that has made it harder for me to get any 'help', but then again, I'm not sure what help can be offered, if any, so I just live with it. 

Many doctors don't seem to take ME/CFS serious until it eventually gets diagnosed as Fibro which seems fairly common, so either people are being misdiagnosed or ME after a long time can lead to Fibro? I don't know. 

I had physio in the past for M.E treatments too. I've been told all sorts of theories as to why I am this way from, 'maybe it's your heart condition has made you more susceptible to being exhausted all the time'  to 'I think you had the flu once, got used to the time off school and then didn't want to go back and got used to the attention.' 

Sometimes when I go for regular checkups with the GP they ask me if I'm doing anything with my life yet, 'do you have a job?' which seems very dismissive of the ME. Not to mention the Depression that is pretty severe and the autism and the fact I live in supported accommodation. The ME label seems to have stained me with the brush of, 'let's not take anything he says too seriously.' 

It's odd, though because the same doctors who ask those questions also tell driving licence people I'm not medically able to drive. So it seems they're confused themselves with what to think and do with ME/CFS patients.  

I'm really impressed with Beer Theory  

I was able to get work to agree to give me flexible timings - I have ulcerative colitis so that's what gets me up in the morning - say 5am - so after sorting my body out I could be at work at 6am which set the meter running.

I did my 7.5 hours straight through and was out at 13:30.

This had the bonus effect of limiting my stress of dealing with the a-holes from 8am onwards - luckily, they were so lazy that 8am = 8:30 onwards then extended tea break 10am until 11am and long lunch from 1230 to 2-ish.     I barely saw them.

I overdid things a few times - got into my car and drove home (10 mins) but was so fatigued I couldn't get out of the car - had to wait 20 mins before I could roll out and crawl to the front door.

That's an excellent analogy. I feel like printing it out to show to people when I am asked to do additional work/social/anything!

Thanks so much for all your help Plastic. It is so much appreciated. 

To date I have been hopeless with spoon theory and always do too much on better days because I get so excited about feeling even slightly better and want to do my endless list of things and then I crash out for days on end. I will continue to work on it.

I really hope you get some help - I ended up just sorting my own schedule out and figuring out my own spoon theory.

There's a brilliant analogy on here - Beer Theory.

https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/17178/spoon-theory-for-grown-ups-a-new-analogy

I really appreciate getting the information all the same. I am sorry your experience wasn’t better. I still don’t think CFS/ME is taken all that seriously, and ASD is frequently misunderstood by the medical profession unfortunately. I am maybe hoping for a miracle here. It will be interesting to see if anyone else has had a more positive experience.

Sorry to not be of more help - 2013 was back in the day when CFS/ME was a newly accepted thing - and I think the two specialists in my local hospital  were out of their depth - but enjoying the lack of responsibility for outcomes.  .

I’m sorry to hear that Plastic. Thanks for the information all the same. It is helpful to hear other people’s experiences.

To be honest, they were pretty useless - like they'd never had a 'real' one before - there was no plan - just a 6-monthly review - like they expected it to magically go away..     I'm guessing they just forced everyone else down the CBT route.

Hi Plastic

Thanks so much for your response. I am glad to hear that you were referred to a specialist service. Two years does sound like a long time to wait and I hope your experience with the service was positive.

From my online research with specialised CFS / ME rheumatologist (or other CFS /ME clinics) services they can offer the following:

• Clear definitive diagnosis. I would find it very beneficial to have a fibromyalgia diagnosis or have it ruled out.
• Support to develop management plans balancing work, home life, social life and exercise goals.
• Guides to self-help and support to have cognitive behavioural therapy to help people cope better with the condition.
• Support for for graded activities.
• Advice for clients, GPs and occupational health consultants about how to balance work, life and treatment schedules.
• Advice on continuing with work or looking at reduced hours or alternative employment etc.

If you are happy to share I would love to hear what kind of support was on offer from the specialist service and if you found it beneficial. Unfortunately, there is no specialist CFS / ME NHS facility in my NHS area and they are unwilling to consider referring me outwith the area. I have been advised to rest which I know I have to do but I am just desperate to get any additional support that might be available and am therefore, researching all potential options.

Hi - I have CFS since a brain injury in 2013 - I eventually got referred to a specialist CFS team after being tested for everything beforehand (it took about 2 years of discounting things)

They seemed to be of the opinion that there are 2 types of CFS - one is just a mental problem  - overload / depression-type thing which can be treated with CBT etc.   and the other is a 'real' problem - that they don't understand and hadn't actually got any special treatment for.        What will a rheumatologist do?