Post viral Fatigue/GF- help me get help from GP

[Partey]

DS who is 10 was diagnosed with GF in March of this year. It followed months of episodes of fatigue/illness.

We followed GP advice, had many blood tests and follow up appointments. DS hasn’t recovered really. I last spoke to GP in august, he still suffers with muscle and joint pain, horrific nausea, headaches and more recently swollen tonsils(which usually cause an awful cough). The GP said that it was normal post GF- it’s had an almighty effect on his mental health too and whilst she sympathised, was content that it was the GF.
This was backed up by the nurse practitioner a few weeks later when another bout of a virus reared it’s head.
We’ve just had another weekend of a huge throat, headaches, awful nausea and cough. He is totally and utterly fed up and chances are he will miss at least a couple of days school this week. This is now a monthly(at least) occurrence and has been for 12 months now- his attendance last year was in the low 80’s bearing in mind school closures and on top of the emotional toll it’s taking it’s soon going to affect him academically.

I don’t know how to help him, his diet is the best it’s ever been. The nurse suggested a multi vitamin which I’ve given for months with seemingly no impact. His concentration and mood is so low at times.

My concern is ME/CFS- from my admittedly limited knowledge but I’m wary of another brush off from the GP, is there a lack of diagnosis for this? I honestly don’t know what I’m asking, any advice, suggestions anything. I’m seeing my little boy absolutely battered by something I can’t seem to help him with

That must be so awful for him and you. Unfortunately, in my experience, the NHS is extremely dismissive of post viral fatigue and associated issues whether in children or adults. I am hoping this changes with long-covid and wider acceptance of post infection/virus syndrome.

One of my children is 4 years post lyme disease (properly diagnosed and they also told us she'd had GF in the past but not currently active) and still has bouts exactly as you describe without the throat and only this year for the first time has a GP admitted it could be post viral fatigue etc.

Personally we've just tried to ride it out. Reduced activities when fatigue setting in but not being sedentary, daily vits, good diet, lots of sleep. Puberty is also bad and made things a lot worse.
Shes had counselling too to talk out her sadness but has mostly maintained life to a high standard with minor adjustments when needed.

Sending unmumsnetty hugs to you both and hope you get answers soon.

My husband had glandular fever not long after we met. He was so ill and ended up off work for 4 months. Then for a good few years he got every bug and virus going. However over time he got ill less and less.

I’m not sure there is much the GP will do but I think trying to maintain a healthy diet and get plenty of fresh air and exercise is important. It’s tough to do exercise when you feel exhausted but it really does help physically and mentally in the long run.

My then 9 Yr old had a virus, really poorly, GP diagnosed either glandular fever or viral meningitis. He was in and out of school for a while, exertion led to symptoms coming back. Unfortunately still has it and he's an adult now, milder but at least 3-4 times a year he gets sore throat, temp, fatigue, nausea and has to rest for a few days. He's still managed a degree and works though not quite full time. GPs very dismissive, did have tests about 8 years later including liver scan, conclusion was Gilbert's Syndrome which is a higher than usual level of bilirubin in the blood and Dr's said shouldn't cause any symptoms, but I'm not convinced. It's either the original virus or that which gives him recurrent symptoms but I never noticed it before the virus that he had at 9 yrs old🤷

I am sorry to hear about your son. Unfortunately due to lack of biomedical funding there is no evidence based medical treatment for post viral conditions and as such there is little the GP can offer. However, it is important your GP recognises your son is ill and is supportive.

If your son’s fatigue is of a nature where all symptoms becomes worse if he extends beyond his individual energy limits then if he is not already please make sure he paces carefully and be cautious with exercise. Pushing through if his energy metabolism is dysfunctional risks causing further deterioration in functioning and could impede any natural improvement. www.physiosforme.com/pvfs-management

Anecdotally if children’s post viral symptoms are managed well such as pacing prognosis is much better but it could take time.

This is a good interview with 2 well informed doctors on diagnosis and management of children with ME/CFS. It may well be your son does not have it but the management principles for it are similar for post viral fatigue syndrome. voicesfromtheshadowsfilm.co.uk/paediatric-mecfs/

You can also ask if your GP can refer you to a paediatric CFS clinic for diagnosis of post viral fatigue or possibly ME/CFS and management advice. However, I would stay away from the Bath clinic or any clinic that offers graded exercise therapy as it follows the incorrect deconditioning model of ME and does not take into account the energy problems should it turn out to be ME.

This is a good piece why typical exercise approaches are not appropriate if your son has Post Exertional Malaise, the cardinal feature of ME www.physiosforme.com/what-about-exercise

As the article says Graded Exercise Therapy will inevitably push a patient beyond their capabilities and trigger Post Exertional Malaise, causing physiological reactions that will make symptoms worse. People with ME have identified GET as the reason for a deterioration in their symptoms.

I am so sorry to hear your son is so poorly. You've got some really good advice on here already.
I had ME/CFS after a mystery virus in my very early 20s. My GP was very understanding. We experimented with a short course of anti depressants, some homeopathic remedies (not my thing at all, but I figured it couldn't hurt!) and gradual exertion.
That was a long time ago and, although my immune system is still a bit weaker than average, I fully recovered.
My advice - take it seriously, sign him off school for a while, minimise all stress, encourage him to do small tasks everyday. Keep a diary to see how different activities effect energy levels and adjust accordingly.
He will catch up on schoolwork once he's feeling better much more than if he tries to limp through feeling ill all the time.
I really hope he starts to feel better soon.

Thank you all. It’s frightening, both the illness and the lack of support/treatment.

He does a maximum 5 hours a week football- in 3 separate sessions. This week it was only 1. Week before it was 2/3. I’m so wary of letting him do too much, it’s a fine balance of managing his physical and emotional health.

@Zotter the article about post exertional malaise is really interesting. Malaise is so thing I’ve not come across before the GF and prior to the diagnosis I was working with the school debating whether lockdown had affected his mental health and whether this was affecting his physical. Reading about malaise obviously showed me it was the other way around.

I’m not sure the malaise is post-exercise, there doesn’t seem to be theme although the school are fairly active-outdoorsy type and he’s certainly been worse in general since returning to school.

Lots of other things to look into off the back of the article though- thank you

Morning- thought I’d update quickly.

I emailed our GP this morning, outlining everything that’s gone on and listing symptoms etc. I explained the impact it’s having on DS too.

GP called me within the hour and DS will be having bloods taken today. She wants to review those before anything else but mentioned ME/CFS and possible referral to paediatrics.

Fingers crossed we get somewhere. Meanwhile DS is too ill for school and we are watching Problem Child

I am 44 and have ME following teenage GF. It may well wear off but the worst thing he can do is to try to “push through”. Early nights are fine (I still routinely go to bed at 9pm). A good diet, fresh air and what exercise he can manage. Get him to keep a diary of energy levels and sickness so he can learn the signs of running out of puff and get rest in earlier to head off illness. He may need to prioritise where he spends his energy. I like the analogy of being an iPhone that starts everyday with only 30% charge not 100. You can do everything a normal iPhone does but you’ll end up running out of battery much sooner so you need to choosy about when you use it!

@Partey, I am glad you contacted the GP today. Before they will consider a diagnosis of post viral fatigue syndrome which can develop into ME but not always they will take bloods to rule out other possible things. If you watch the short 10 minute interview with the doctors who treat young people with ME they talk about the importance of a diagnosis if that is what they have. The U.K. doctor, Dr Speight , points out a diagnosis validates the child is ill and can be protective. For example, it might turn out the child can’t manage a full school timetable and a supportive medical professional can liase with the school the need for the child to be on a reduced timetable until they hopefully improve.

Regarding post exertion malaise, it can happen not just after exercise, but whenever the the patient exerts themselves beyond their individual activity limit. The limit varies depending on the severity. Someone severely affected may find their symptoms all get worse after really trivial mounts of exertion such as even sitting up in bed, brushing their hair whilst at the other end of the spectrum a full working week or school and social activities may beyond their limits and they need to reduce it. As Peace43 says it can be helpful to view the patient’s energy quota as equivalent to a charged phone. Some people with the illness will never be more than 5% charged whilst another might have 60% charge. However when both of them use up all their charge they will start to experience PEM - and even when not in PEM the more ill the person is they will have symptoms at baseline made worse by exceeding their limits. PEM is not the only term used some say a better description is post exertional symptom exacerbation. It is not usual that a person with ME can manage aerobic exercise but the more mildly affected ( and although I use the term mild when it comes to ME even mild means a big reduction in what someone could manage before they got ill) could manage some gentle exercise. It’s just working out what the patient’s individual limit is. Also note it’s not just physical activity that can bring on PEM but cognitive activity and even emotional, these all use energy.

You said you are finding it hard to balance that he does not do too much but also taking into account his emotional health by having to do less with his friends etc. A doctor or nurse who is knowledgeable about ME /post viral issues will say it’s important that the reduced energy output is not only used on school work but also pleasurable things. It is very hard suddenly not being above to do the things your friends can do.

Once again should it turn out to be something like ME, children/young people if they are given support and pace well early on have a much higher chance of full recovery, so although it’s not easy now there is every good chance your son will improve if it’s managed well now. Also some post viral syndromes can be long lasting, even up to 2 years, but then natural recovery happens. So I think it’s really good that you’re getting your doctor to consider whether your son should be referred to a paediatrician or clinic to rule a post viral/possible ME diagnosis in or out. Good luck and I know it must be very hard seeing your son struggle but there is every good chance he will get better if it does turn out to be something like ME if he gets the right support now.

@partey, just to add I thought the following information from the ME Association’s website on diagnosis may be helpful. It says:

“In most cases, diagnosis and ongoing management for children and young people will be led by a paediatrician, but there are several specialist services who are able to provide second opinions and ongoing management advice. The NICE clinical guideline on ME/CFS states that:

1.2.2.2 A child or young person who has symptoms suggestive of CFS/ME should be referred to a paediatrician for assessment to exclude other diagnoses within 6 weeks of presentation.

1.3.1.1 A diagnosis should be made after other possible diagnoses have been excluded and the symptoms have persisted for:

• 4 months in an adult
• 3 months in a child or young person; the diagnosis should be made or confirmed by a paediatrician.

1.5.1.2 Referral to specialist CFS/ME care should be offered:

• within 6 months of presentation to people with mild CFS/ME
• within 3–4 months of presentation to people with moderate CFS/ME symptoms
• immediately to people with severe CFS/ME symptoms.”

meassociation.org.uk/nhsspecialistservices/

Meant to also add when a person with ME has done too much and are in a PEM flare they can have an increase in flu like symptoms as well as general exhaustion. Also in the interview with the doctors I posted above they mention how it is common for young people with the illness to get frequent viruses etc. Many adults with ME are the opposite and rarely get a cold etc, some small studies suggest could be due to dysfunctional immune system with some in overdrive.

Finally, a good table outlining the nature of PEM.

Thank you all and especially @Zotter, I appreciate the time you’ve taken to send me all of the above info. I’m going to sit with a coffee and read through now.

Interestingly the nurse practitioner who last saw DS did kind of suggest “pushing through”. I feel that she got the impression I was mothering him excessively, and maybe keeping him home and in a cocoon if that makes sense? I did tell her that I was worried about him actually doing too much, with the post viral fatigue info in mind but she was fairly dismissive and said “if he feels up to it then let him do it”.

Bloods have been taken and should be back within a few days, the nurse also took his blood sugar levels which were fine. The GP I spoke with this morning wants to see him in person. She is new to the practise and seems very very nice, very easy to chat to.

Off to read @zotters posts in more detail now. Thank you so much

I am glad the posts on here from everyone have been helpful. I am more than happy to help.

Sadly, there are still medical professionals in this country who give inappropriate advice as they have not been taught the correct information about post viral syndromes or ME - even implying the parent is mollycoddling the child, as you felt the nurse might have felt - and giving harmful advice to push through. Your son might be able to do some exercise within his energy limits, so the nurse saying if he feels up to it then let him do it is in itself not wrong. The key is working out what his energy limits are, how to spend his energy and not to push through.

This is why a diagnosis is important if that is what the person has and exhibits all symptoms getting worse after exceeding their individual exertion limits. Pushing through if they are like this risks further deterioration in functioning and impedes improvement. At the worst end of the scale is a child or adult being put on an inappropriate graded exercise therapy programme and going from mild to severely affected.

In the video I posted of the 2 doctors, Diagnosis of paediatric ME/CFS with Dr Nigel Speight and Prof Peter Rowe, you will see they cover, starting at 8 mins, 30 seconds, how sadly ME (should that be what your son has, it’s a specific constellation of symptoms) has been controversial, especially in the U.K., US has been a bit better in recent years. The controversy is the false claim - and the dominant one for many years and still prevalent in this country amongst the medical profession - ME is either fully psychological or has a large psychological component. As Dr Speight says in the video there have been 3 major reports that make it clear ME is a physical, organic condition. The US 2015 Institute of Medicine (now known as the National Academics of Engineering and Science) report states:

“It is clear from the evidence compiled by the committee that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.” www.ncbi.nlm.nih.gov/pubmed/25695122

The U.K. NICE guidelines are currently being updated, link here. www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline

The new draft guidelines say it is a complex, chronic medical condition affecting multiple body systems. It also says it should be recognised tthat people with ME/CFS may have experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness. It also says, ‘be aware of the impact on children and young people with ME/CFS who have experienced prejudice and disbelief by people they know and who do not understand the illness (family, friends, health and social care professionals and teachers). Health and social care professionals should understand this experience may result in a breakdown of the therapeutic relationship, lack of trust and hesitation to engage further in health and social care services.’

As said, it may well be may well be your son will not develop full blown ME, but has a form of post viral fatigue syndrome. However, the management principles, pacing etc, for post viral fatigue syndrome are the same as ME and if applied reduce the chance of it developing into ME. All the best to you and your son, feel free to ask me further questions anytime.

Some amazing advice here!!!! ⭐ Thank you.

If only those of us with years of M.E. had access to this appropriate medical advice after we'd first got ill . Graded Exercise anyone?

So sorry to hear about your son Op. I'm sure he'll bounce back Dr Nigel Speight is our best M.E. Paediatrician, if it lingers around & you want private advice.

@SunshineCake1 I know you're a 'little bit' older, but thought of you x

Well done @Zotter. Just read your post above.

I’ve not got round to the videos yet @Zotter but one of your links took me to some information about “boom or bust”. ie- when he feels good he’s going hell for leather only to “bust” the next day. There are certainly elements of that I can see in our lives. Psychologically, on his good days DS is so happy he probably is over exerting only to crash soon after. It’s such a complex myriad to consider.

I’ve thought about occasions where the boom days aren’t very boomy off that makes sense. Last Wednesday he developed a sore throat, I stopped him from doing his football training(2 hours usually) but still sent him to school Wed, Thu and Fri basically because his attendance is poor. This, even without any actual flat out physical exertion has brought the “bust” over the weekend. Full blown flu like symptoms and nausea. It has certainly made me rethink my approach to school- who I must say were v v supportive during his GF. Once we have seen GP in person this week I will make an appointment with school to bring them up to date. Possibly think of a back up plan when absent maybe. This then gives me the worry that social interaction is more important than academic attainment! Gosh so bloody much to consider.

I’m off to listen to the video in the bath now but your information has been very very enlightening and informative. Much more so than so much I’ve managed to find myself online

Your DS might be resistant but consider getting a transit wheelchair for the bad days. It took a while to be accepted for us but made a big difference. Also work with the school and hope they don't make an issue of attendance.

do you think there is a magic cure that 'they' know about but refuse to give your child ? Do you think there are wonder drugs that can sort this out ? do you think that 'they' know what to do but just refuse to do it for some (what ?) reason ?
so could t be that actually this is a difficult condition for which there is no cure, no treatment that makes any difference at all, and that advice, supportive measures and time are actually the only things that will make any difference at all

@Flixon
I typed out a really measured response to that. Then I deleted it.

Fuck you instead. Every other poster has been nothing but supportive, particularly @Zotter who has taken ALOT of time to share her knowledge- which is exactly what I’m seeking via my GP/Specialists- you know the people who’ve trained for fucking years and who are infinitely more knowledgeable than I?

Not once have I alluded to “them” being a mighty power who must cure my child immediately. I have in fact alluded to being blown away by the complexity of the whole bloody thing. I’ve also praised the GP and his school. While running on very little sleep, stress and mainly fucking coffee!

OP you have my sympathy. I was diagnosed with ME/CFS three years ago following a particularly nasty virus/post viral fatigue diagnosis.

To share what I've learned over the past few years:

1. A GP/consultant who understands ME/CFS, or is at least sympathetic and interested in helping, is key to getting on the road to recovery.
2. The sooner you get a 'treatment' plan in place, the better. That plan looks different for each person and is based on managing symptoms initially. It's also mostly trial and error unfortunately. You will have to take ownership of the treatment plan because you know your son best and you'll be able to identify what works best for him.
3. Consistency is key. I needed to learn my 'baseline'. This is the level of activity that I can do without bringing on a crash or getting payback. Consistency is the thing that helps the nervous system 'reboot' so to speak and prevent Post Exertional Malaise (PEM).
4. Crashes/payback/PEM mostly happen 24-48 hrs after I have have exceeded my baseline (my baseline has increased significantly over the past three years).
5. PEM is real, do not try to get your son to 'push through'. People who don't understand ME/CFS think that pushing through is an appropriate way to regain function. I found it harmful. For me, headaches, flu-like symptoms and irritability are indicators of PEM onset.
6. 'Brain fog' i.e. low ability to concentrate is real. It normally occurs when I'm at a low ebb and is an indicator that I need to reduce my activity levels. I find it very frustrating, but understanding what it is helps with accepting it.
7. Fatigue is not the same as tired, very tired, drained or exhausted. It's far worse and while sleep doesn't necessarily help it is massively important.
8. Simple things that helped me - mapping my symptoms/pain triggers; acceptance; good sleep health; a new mattress that is super comfy; CBD oil at nighttime and CBD rub for sore joints/muscles/restless legs; Vitamins: B6, B12, CoQ10, Magnesium and Ashwagandha; swimming (aka floating about in sea water!) as exercise because it supports my body in weightless movement, epsom salt bath is a similar idea; not attempting to 'push through'; avoiding GET; a snack before bedtime to elevate my blood sugars during sleep to help me stay asleep; taking recovery slowly in the knowledge and belief that I will regain full function; mindfulness (I enjoy the Calm app but not Tamara's voice!).

In the early stages of my illness I kept a daily diary of symptoms to help me identify the symptoms that most affected my energy levels/pain levels. Keeping a diary of activities and how much it affected me also helped me to identify my baseline. There are apps out there that allow you to record pain, where the pain occurs and the intensity - this also helped me to identify pain patterns. Altogether this approach helped me build a map of my symptoms, my baseline, my PEM triggers which helped me put together a management plan.

Two good books -

• From Fatigued to Fantastic (Jacob Titlebaum). Dr. Titlebaum also has some videos uploaded to YouTube.
• Rethinking Pain (Helena Miranda)

I don't recommend these for your son necessarily, more as an educational tool for you as a parent supporting him (although you seem to be doing a stellar job already).

And finally, Raelan Agle on YouTube is an uplifting channel that shares recovery stories.

@TattoedLady thank you for sharing your experiences. One thing that sticks out is the sleep patterns. Aside from his terrible cough now DS usually sleeps quite well. He does go to bed earlier and wakes later since the GF but it is usually uninterrupted. The headaches he experiences however, he usually wakes up with so I’m wondering just how rested his sleep actually is. He describes his head as hurting to wobble, or when he bends over. I think I know what he means!

We’ve used Epsom salts for over a year now, they were recommended by a physio we saw when we thought he’s knees swollen due to injury.

I suppose I’ve Doubted any long term effects for too long. DS, although he does sleep longer, doesn’t really display tiredness- in the physical sense. His mobility is always good(since the GF left anyway). He is definitely more irritable and frustrated. I do also notice on his better days he almost seems hyper- like a coiled spring.

Again thank you for sharing, I’ll look through your suggestions in more detail this morning

Very weary here, but you're right to be concerned about his hyper days.

If he can suddenly do something that he hasn't previously been able to, that's suspicious.

As is having no pain, more energy + enthusiasm all of a sudden.

I can't supply the exact science, but this is false energy. He would now be operating in his anaerobic threshold. It can feel great btw & you don't want it to stop.

With bitter experience, over 5 years, I eventually realised I had to stop & rest as soon as I recognised it. I didn't want to as I felt 'well' . Often it was other's around me who spotted it first.

Reversing this fake energy as soon as possible meant my relapses were shorter & less painful/fluey.