This gives me such mixed feelings. I'm really pleased that this work is being done, with really joined up thinking across medical disciplines.
@Donsboig It's ok to feel this way, I do the same and it's because ME/CFS is a debilitating, physically real and life-changing condition, where patients haven't been given access to the correct support and treatment.
I feel what we are witnessing here is possibly the largest epidemic of post-viral fatigue and ME/CFS or another post-viral illness that is overtly strikingly similar to ME/CFS, but there is access to treatment because the cause is COVID-19.
I can't remember the findings in this video, but if there is anything you also want to test for due to your symptoms, you can request your GP refers you to a specialist who does it. According to the NICE Guidelines GP's
should do this once you have a ME diagnosis as part of the individualised management plan. But there is a lack of information sharing between ME/CFS specialist services and primary care, plus an unhelpful notion often reinforced by fatigue clinics that the illness is a functional disorder.
This is in part true........ more people diagnosed with ME/CFS do not have organic symptoms due to the issue caused by current clinical ME/CFS diagnostic criteria. It was found that 1% of patients that attended fatigue clinic had organic neurological symptoms.
Without waiting for objective testing to be finalised for ME/CFS, you can buy an HRV monitor that can pick up sympathetic and parasympathetic abnormalities which may provide access to an autonomics specialist. Some pwME have already done this. You can show the results to a GP if you feel they will dismiss exercise intolerance as being anxiety induced. You can also ask for a referral to an endocrinologist to check cortisol levels due to sleep disturbances, etc. but of course, you want the referrals requested to correlate with
your symptoms that you need to tell your GP about. Plus, there needs to be objective tests performed on pwME or
Long Covid that shows abnormalities available for it - which requires research....... The tilt table test, for example, can show autonomic abnormalities in pwME.
However, this service would have been an absolute godsend for pwME many years ago. Very frustrating that's it's not been done before.
100% agreed. I wish this was available for people with ME both currently and many years ago. But from my experience you can access further help, but I believe it depends whether medical professional decision-makers think your symptoms are real. For example, I have done several posts about my experiences, as I am seeing an autonomic specialist neurologist on the NHS. I was referred to one before, I, myself, requested a referral to the fatigue clinic. My GP at the time was aware of the sudden onset of neurological symptoms I have expressed without suffering from a mental health condition and referred me to a neurologist. My later CFS diagnosis then interfered with receiving thorough investigations, as once I was diagnosed with CFS the neurologist was the first person to tell me the diagnosis means my symptoms are all in my head and became reluctant to perform autonomic testing. However, during an appointment where he attempted to discharge me, I told him about my new onset of symptoms which must frequently happen with dysautonomia, as that is what my next upcoming tests are for. He went on further to explain the ME/CFS diagnostic criteria means there are different patient subsets, some without neurological symptoms.
I've now found that by making your GP aware of the physical basis of the condition helps to get referrals made. My GP has now received a detailed explanation of what ME/CFS is from advocates at the charity Action for ME, NHS secondary/specialist care and private ME/CFS specialists.
So much of what they discussed is familiar to me, and it's all information that I've had to struggle to research myself, using energy I don't really have. Often finding something that would be useful to test for, but the NHS won't offer it!
I know exactly what you mean, it's so hard doing the research and then suffering for it later. Some testing is available on the NHS, but it's tricky as no one is performing the tests designed specifically for ME so results can be variable, etc.
Anyway, ranting aside, is anyone aware of any UK or global activism to ask the health service to please, please provide something like this for ME?
*Edit to say that I truly am pleased for those with long covid who are able to access this, it seems promising*
I'm interested in this too. Who is campaigning about pwME needing this? At this rate, it seems down to us to get the ball rolling. The possibility of both Long Covid and ME being the same is being recognised but nothing is being done...... I had a consultation with an infectious disease and ME/CFS specialist this week, who is now doing Long Covid research who agreed that Long Covid is very likely to be the same.
Any referrals you do ask for, try and request them with doctors treating long covid patients which is what I’m currently doing. It doesn't guarantee anything but may get you a step closer to more testing or better sign posting.
