Do I have ME or CFS? — Scope | Disability forum
Find out how to let us know if you're concerned about another member's safety.

Do I have ME or CFS?

Hi everyone, I’ve just joined the community and would love some advice on ME and CFS!

I’ve experienced chronic fatigue for the past 8 years and it's gradually got worse and worse. After moving house 2 years ago I joined a new GP surgery. I’ve been there a lot, with multiple problems, and yet I’ve never seen the same doctor more then once (many are locum). It makes it hard to build up any kind of relationship with a doctor and even harder to get a diagnosis.

After years of blood tests and seeing lots of different doctors, I was finally told by one a few weeks ago that I have Chronic Fatigue Syndrome, he said this is also called ME but they are the same condition. However because they found I am deficient in Vitamin D, I cannot be referred to the ME/CFS clinic until that’s at a normal level.

So why am I confused? I’ve read that CFS isn’t actually a diagnosis of anything. It’s a “we don’t know what’s wrong or causing these problems” and should only be given when a person has no other conditions that could cause fatigue. But I also have Functional Neurological Disorder and Irlens Syndrome, both which can cause fatigue. Vitamin D deficiency also causes similar symptoms. This is confusing to me, is it possible to have CFS if you have other conditions that can cause fatigue?

When I’ve looked online there seems to be people fighting against the idea ME and CFS are two names for the same condition. Many say they are completely separate but lumped together because they have similar symptoms. I have read that ME is not a diagnosis of exclusion, where CFS is. There also seems to be multiple differences between the two conditions, mainly the cause of them. However, I spoke to someone at ME association who said “There are no clear pathological markers that separate ME from CFS.” He also said you can have both.

I am very confused! Do I have ME or CFS? Do I have both? Or are they essentially the same thing?

It is incredibly difficult to get a appointment at my doctors surgery, recently I have been told I can’t book an appointment and I need to go to drop in in a morning if I want to see a doctor. That involves waiting in the surgery for hours and sometimes I just am not well enough to do that. And the doctors I have seen don’t seem to know the ins and outs of the conditions and the possible differences between them. I do see a neurologist once a year, but I had my annual appointment a month or so ago,and to be honest the neurologist was pretty unhelpful. Appointments are very rushed and I’m simply told there is nothing they can do for me. And until my Vitamin D improves I cannot be referred to the ME/CFS clinic! So I’m in a bit of a pickle and would love some advice. Thank you!


  • lisalouise999
    lisalouise999 Member Posts: 10 Listener
    Hello there. I've had ME for over 5 years now. It's now referred to as MECFS because they are two names for the same condition. Weirdly enough, I also have Irlens Syndrome. MECFS is now known as a neuroimmune disease, which means it is likely to be a virus or bacteria which our immune system overreacts to, which then triggers a strange array of neurological problems in the body. Vitamin D and B12 deficiency are common in people with MECFS, I take supplements of both to help keep my levels normal. I would definitely recommend starting some simple supplements to top up your vitamin D levels. 

    Are there any specific questions I can help with? My brain isn't firing on all cylinders lol so I can't remember what else you needed help with. The ME Association is a brilliant source of information and they have a helpline too. 
  • tommy866
    tommy866 Member Posts: 2
    Hello ismvnew here and stumbbled across this site. I have cerebral palsyvand i was looking in to the symptoms associated with MECFS i have depression and anxiety. However since starting back at work have had creased pain in my non effected side. And difficulty getting to sleep and getting up. I had not worked for 2 years and have been back at work as a nurse for 13 weeks iamvto tired to go the gym and am only doing 3 shifts a week. I dont know what to do both my neurologist and GP dismiss it siteing i have OA iam only 30
  • Alice11
    Alice11 Member Posts: 3
    edited May 2016
    Hi lisalouise999, thank you for your reply. Yes I'm on two Vitamin D tablets a day, and an extra strong ones once a week.

    I think my question is based on the idea that CFS isn't a diagnosis of anything, I've read many articles on this. So many say it's what doctors diagnose when they don't know what's causing the symptoms, and that worried me because I have other conditions that can cause these symptoms. I'm still finding it quite confusing because people have so many different opinions on the condition/s. Yes they are, I spoke to a doctor from the ME association, he was very good at explaining everything to me but still said it was complicated as there are still different medical opinions.
  • JadeB
    JadeB Member Posts: 62 Courageous
    Hi tommy866. In reply to your comment about increasing pain. I also have CP after 14 years of physio I have always been quite mobile and independent. However over the last year I have found, my pain and discomfort has increased. I also very tired a lot of the time. I went back to physio after not having any for 7 years and they said my muscles have weakend over time. Thus causing the pain increase. I am now having more physio in the hope it will help the pain decrease xx yoga is also good for pain relief x
  • tommy866
    tommy866 Member Posts: 2
    Hi i used to do middle distance athletics but sjnce commencing work full time i have had to stop. I dont streach as mhch as i used to or go to the gym as much. Iam aware winter can increase muslvle spasticity but i work as a nurse i work 3 days a week 3-10 (this is usually 1130 by the time I get stuff done. So by the time i get home iam exhausted iam on regular opiods and benzos for pain and anxiety which would no doubt contribute.
  • JadeB
    JadeB Member Posts: 62 Courageous
    I know what you mean I work until midnight sometimes so won't have any time or energy for physio when I get home at that time. Hopfully once your back into the swing of working the pain might decrease a little. Hope you start to feel better soon xx


Complete our feedback form and tell us how we can make the community better.