Chronic fatigue (?) A levels - argh help

The loss of function was caused by severe burnout. That’s what the pyschologist at the Childrens Hospital ND unit told us.

Lots of specialists, psychologists worked there. They all recognise it.

She’s been unwell for 5 years. She is improving, but that’s how long it’s meant to take to fully recover from severe burnout.

But I’m guessing there was an explanation for the the loss of function? Sensory overload? If I’m having autistic/neurodivergent burnout, I get a loss of function too and I am like that all day every day until I recover. And recover I always do. The last episode was caused by a lot of emotional demands in one day. It is very different from ME/CFS symptoms.

With ME/CFS, I can only walk a short distance before i start feeling ill. That short distance varies in length from day to day - sometimes i start feeling ill after 20 metres, sometime I can walk more like 300 metres before I start feeling ill. You don’t get this with autism or ADHD. For context, just before my ME/CFS started, I competed in a marathon. I was super fit, very sporty and loved going for long walks. The marathon was late 2021. Now I struggle to walk to the bus stop.

PEM is a hallmark of ME/CFS and you won’t get a diagnosis without it. If I push through and for example decide to walk 500m or even 50m fast, I will likely feel dizzy while doing it and then the next day feel absolutely exhausted - probably similar to the level of exhaustion I had the day after the marathon - I will also have a sore throat, a pounding headache or aching hips or both. You don’t get this as a result ofnneurodivergence, so I think ME/CFS is relatively easy to distinguish from autism or ADHD.

My dd had a lot of loss of function though. Couldn’t read, couldn’t walk very far.

She didn’t have PEM as such, but would be very very tired after any congenital or physical fatigue.

Support in schools is based on needs rather than diagnosis. The school must make reasonable adjustments. If they are a state school, they must make their best endeavours to meet DD’s SEN. Although it is clear she needs more support than can be provided at an SEN support level.

Section 19 of the Education Act 1996 only places a duty on the LA to provide education to those unable to attend school for those who are compulsory school age. While LAs have the power to make provision for post 16 pupils unable to attend, they don’t have the same duty to, so most don’t. This is where having an EHCP is important because provision can be made via that beyond CSA.

I still don’t understand the logic of this. To get an ME/CFS diagnosis, you have had a substantial loss in ability to function, which cannot be explained by increased demands. This wouldn’t happen if your only issue was neurodivergence.

Granted some neurodivergent people might be often very exhausted and might have brain fog but if you’ve got autism or ADHD and not ME/CFS, you are also not going to have post exertional malaise (PEM). Neurodivergent people have shutdowns and burnout which are not particularly similar to PEM. I know because I’ve had the former all my life and the latter only since late 2021

Anecdotally, I was diagnosed with autism and ME/CFS 3 years ago. The ME/CFS clinic were fully aware that I had an appointment for an autism assessment a few weeks later. The clinic put me in some group seminars with about 10 other people and 3 of us had autism, ADHD or both.

You can do online ones via various institutions, just google them. Learn Direct is one.

The f2f are at FE colleges. They are 3 days a week but very intense. Last from September to May.

The online ones you can do for longer.

Because ME is a diagnosis of exclusion. And as there is a link to CF and ND they exclude them.

What makes you say that?

She’s not my friend. She is my psychiatrist. She is also one of the leading experts in ADHD in the UK. She also diagnoses autism and has done for decades.

Simply based on my own personal experience, I would have said a few months ago that I am autistic but definitely don’t have ADHD.

i knew about 10 or 15 years before diagnosis that I was autistic but it never crossed my mind that I might have ADHD until DC2 got diagnosed recently. That made me do rhe ASRS screener, the result of which was that ADHD was highly likely. When I read the diagnostic criiteria for ADHD, I didn’t think they sounded anything like me at all, but how wrong I was.

Your friend may be experienced but there are millions of autistic people who definitely do not have ADHD.

Where do you do access courses? Are they from online providers or do you attend like college? It all seems confusing. How do you know who a good provider is and what the right sort of access course is right?

I understand you are having all doors closed on you! Get yourself to the sn section. They will help you push back. You become a multi faceted pusher. You politely demand the GP actions, politely and firmly, you insist that referrals and letters are sent. You phone medical secretaries. You write re EHCP yet again. Anx you write to Senco and HoY. Then 3 days later, you write again. You have to play the game. You quote law, procedures and policy at them. Tell them they have a duty of care. In the end you start to enjoy the fight!

I understand you are having all doors closed on you! Get yourself to the sn section. They will help you push back. You become a multi faceted pusher. You politely demand the GP actions, politely and firmly, you insist that referrals and letters are sent. You phone medical secretaries. You write re EHCP yet again. Anx you write to Senco and HoY. Then 3 days later, you write again. You have to play the game. You quote law, procedures and policy at them. Tell them they have a duty of care. In the end you start to enjoy the fight!

@Abthdust I feel for you. My dd has a medical diagnosis of CFS. There was a point where we truly thought she’d be in bed for life.
If your dd has an official medical diagnosis of Chronic Fatigue then there is an awful lot of support available.
My Dd was able to go in and out of school as her needs allowed.
Was local authority funded for tutoring, only an hour per week per subject, but one to one. That really helped.
All her A levels were all scheduled to begin at 9 am
Received extra time and rest breaks for all her A levels
Had disability assessment for uni which provided taxis, computer, printer, paper, extra software etc……

My Dd has POTS - sounds like your Dd has very similar symptoms. It took a while for Dd to get a diagnosis and we did pay for her to see a consultant cardiologist. She started having problems in year 13 and we now know from blood tests that she had glandular fever in the October ( we didn’t even know she had GF she was just off school for two days with want appeared to be a cold) and then deteriorated massively from December. I know a private appointment is not cheap, but having confirmation from a consultant did make a huge difference.
school was very helpful and from January until her a levels she only attended part time as she could not physically manage to attend every day. It did help that she had a a diagnosis and the consultant wrote a very detailed letter explaining what the symptoms were, what she could and could not do as a results and how the school could best accommodate her. I know you don’t have a confirmed diagnosis yet, but would it be worth a discussion with school re the support your Dd needs.
with regards to exams my Dd received rest breaks - the school can authorise this, does not need approval from JCQ and also extra time- which does need to be approved and we needed evidence that her chronic condition was affecting her ability to work at her previous level. School provided this as there had been a deterioration in her exam results - due to brain fog and fatigue. I know your Dd is only in tear 12 but worth researching what evidence will need to be provided.
of course when you have a chronic condition that causes fatigue extra time can be detrimental as exam go over the three hour mark, you feel more tired etc, but having that time and rest breaks and learning how to manage these access arrangements is helpful.
I wish you and your Dd well - seeing your child so physically exhausted from every day life is just soul destroying.

That’s strange about it the ME clinic refusing to see neurodivergent people! Any idea why?

i was diagnosed witb ME at Epsom and St Helier NHS. It was really obvious that I had ME . Before it started, I was playing competitive sport. I knew I had ME when I nearly collapsed on a short jog. The difference was like night and day. I was having to stay in bed nearly all weekend too to cope with the working week. Before that I had possibly been more tired than others but nothing dramatic.

Yes, getting an EHCP is like getting blood out of a stone.

Never ever take the pressure off the LEA.

You're gonna have to fight, and hard. Has your GP sent chasing letters to consultant etc. Have you chased the EHCP. You need to be on it, chasing all the time. Plus school, they don't even need a diagnosis to get most things installed. Have you actually written down all you want and asked WHY it can't be installed.

Fatigue is related to ND due to high levels of masking of trying to function in a NT environment. There is also a big link between ADHD and CF.

My dd had dreadful fatigue for 4 years due to burnout. She also spend a lot of her previous life being very tired due to undiagnosed ADHD.

CF clinic here won’t see ND.

That sounds so hard, OP. My DCs don't have these problems. However I do. I have autism, ADHD and ME/CFS. It is relatively 'common' to see these three conditions on one person.

I'm curious as to why the GP has ascribed the fatigue to neurodivergence. It is certainly more stressful and therefore more tiring living as a neurodivergent person, especially if undiagnosed because however good your understanding is, without a diagnosis you are unlikely to have a complete understanding. I possibly did have some level of fatigue and when I was at school but not to the extent anyone was worried. I do remember every week being very tired every Thursday and worse on Friday.

Has the GP considered ME/CFS?

If you want to find out more, there is lots of information on the ME Association website. They also have a very good telephone and email help line - they would be happy to answer any questions.

Have you considered an ADHD diagnosis? According to my (incredibly experienced) ADHD consultant psychiatrist, she has never met an autistic person who she can't diagnose with ADHD. There aren't really any meds for ME/CFS but she has me on ADHD meds, fluoxetine (aka Prozac) and another off label medication to help me fall asleep which is actually for menopause. Overall I fell much better. I couldn't directly say it is helped the ME/CFS but it has helped overall, so maybe it has helped.

You can get Lyme disease in the UK. I have a friend who got it from a walk in the south of England and still suffers.

If you decide to EHE, you can still get lab time and you might surprise you how much doesn’t require a lab too.

It is also something that could be covered otherwise than at school/college with an EHCP.

It is still possible to do the practical endorsement for A level.

Unfortunately, some schools genuinely won’t have the space for somewhere quiet to rest.

Oh ok - she has chosen about the best subjects for self-studying!

Both maths and further maths are basically a case of learn new techniques -> do lots of practice questions.

I would recommend:

• A textbook for the correct exam board
• Free online videos to replace the classroom teaching - I think the biggest and most complete are Bicen Maths and TLMaths but others are available and it depends on her exam board and teaching preference.
• ChatGPT (or other LLMs) are also good for walking through the steps of any problems if you get stuck and don't have full worked examples. Obviously you still have to engage your brain, but they are useful if you just need a hint in the right direction.

Physics I know less about but you are right about the lab work - you need to complete a certain number of required practicals as part of the A-level so she should prioritise classroom time for practical lessons. I think 'A-level physics online' is a well regarded resource with video lessons available as well as a couple of paid options.

I just want to say I'm giving the advice based on prioritising getting her to 'keep up' with her year (rather than the EHCP sides of things) as it sounds like she can if she is able to attend on a reduced basis.

I'm thinking if you had a structure where the sixth form let her know what was being covered each week, she completes the work (but using video lessons instead of in-school lessons when she's not well enough to be in) and then submits work to be marked at the same time as her class. She goes in for physics practicals (and perhaps tests?) as a minimum for now?