ASD and CFS /ME - private rheumatologist

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?

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.

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.

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.  .

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 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.