To wonder how many people have CFS/ME?

[millionsmissing]

Recently a close family member has been diagnosed with ME. It's an awful illness that is stealing her youth.

She doesn't speak about it because of the stigma and lack of any available treatment or research into possible treatment.

She has resigned herself to having to live with this condition, probably for ever. She went from being active, fit and doing a job she loved to being unable to read, drive, hold a conversation without losing the thread of what she was saying. This happened, quite literally, overnight.

When she was first diagnosed she learned that many people with this condition find themselves so ill they are unable to get out of bed for years. She is lucky in that she is not as ill as many people are. But she doesn't know if she will ever again be able to hold down any full-time job, let alone one that allows her to use the skills she has worked hard to develop.

It's an invisible illness.
No-one sees her when she is feeling really unwell. She stays in her room, with the lights dimmed, and the heating on, whatever the weather, wearing the big jacket she no longer needs for mountaineering. She has all the kit for this illness, hats, gloves, down jackets and sleeping bags - she never thought they would be used for this.

Most people have no idea how ill she is, she only sees them when she is well enough to power through on adrenaline.
She doesn't look ill. People are constantly telling her how glad they are she is better when she is well enough to socialise. She has stopped telling them she isn't because they can see for themselves that she looks fine and so they assume she is either lazy or a hypochondriac.

But the energy used on not looking ill costs her days as she recovers enough energy to function again. She often finds herself without the energy to stand up for long enough to have a shower.

So AIBU to wonder how many others suffer from this condition and to be outraged that we are not researching like crazy to find the biomedical causes of this illness that is stealing the lives of so many?

[IamtheDevilsAvocado]

Me too!... 20+ yrs... Thankfully no where near as bad as was..
Had it following hospital acquired mrsa after I almost croaked.
Just now realising how shit it's made the last 20 years...

[FeedMeAndTellMeImPretty]

I would love to know how many people diagnosed with CFS/ME have had a full panel of thyroid tests done. I hear of so many people fobbed off with this as a default "we can't find anything wrong so we'll call it CFS" diagnosis, when in fact they are being under medicated/not medicated at all for thyroid issues, which are only relieved by optimal treatment.

eg. a normal range for TSH would be under 5 but I would feel like death at anything above 2 (was 200 when finally diagnosed). If I stuck to what my GP told me I would be unable to function, aching, exhausting, freezing cold, dry skin, brain fog - all these are symptoms of underactive thyroid as well as of CFS.

The link is clearly there but nobody is joining up the dots. The fact that many people with CFS also suffer with other auto immune conditions and have had glandular fever in the past is another indicator that they are all linked, but for some reason doctors want to treat everything as separate rather than looking at getting thyroid function optimal.

[LoniceraJaponica]

DD has had extensive bloods done, including thyroid function testing. She is on Iron supplements and vitamin D.

[Battyoldbat]

That’s interesting FeelMe
I am pretty sure I have thyroid issues as well as pernicious anaemia - my TSH is always above 2 and has been up to 4.5 and I have tested positive for thyroid antibodies. But the endo I saw said they wouldn’t treat until TSH was ‘way over 7’ so at the moment I’m just being monitored annually until I deteriorate enough for them!

[TammyswansonTwo]

FeedMe how did you get anyone to listen? I am convinced my issues are thyroid related and have been for years. My TSH is always just over 2 but my FT4 has been gradually dropping (last time it was 12.5, normal range starts at 12) and that was from a private test I had done. I think I have central hypothyroidism which is rare but can be caused by two medications I'm on or have been on. My GP is sympathetic but insists it epj

[TammyswansonTwo]

Sorry; page crashed

He insists it would be dangerous to give me Levo. He even spoke to an endocrinologist who said that if my TSH and FT4 are still in normal range then it would be irresponsible to give it, and everyone would want to be on it if they could as it would reduce fatigue etc 🙄

I've just got another kit to do another private test as my gp says that's my only option now - just to wait until it falls outside of normal range. It's so frustrating as my FT4 shouldn't be this low with a normal TSH range, it just shouldn't based on all the research I've done it suggests there's definitely something wrong but the gp and clearly even the endocrinologist he spoke to don't know enough about it. Just so pissed off - this has been ruining my life for a decade, would it really be so bloody bad to give me a low dose and check my bloods to make sure my levels were safe? It's ridiculous.

[Namebot]

@battyoldbat

Look up the NICE guidelines for under active thyroid - they state that a trial of thyroxine is appropriate for people with under active symptoms and an elevated tag between the upper normal limit (4.5) and 10.

Can you get a second opinion? I have hashimotos and until I got effective treatment ( levothyroxine and liothyronine) I had many symptoms that sound very similar to the key symptom that many of the posters on this thread have described.

[Battyoldbat]

Name the problem is that the 4.5+ result I got (and the high antibodies) was on a private blood test which the gp and endo won’t recognise as significant because they don’t know how it was stored and processed. Oh but they also won’t retest my tsh themselves because I had it done with them in Jan and it was only 2.8 ish. They won’t test for antibodies at all until my tsh is out of their range 😣
They were convinced my fatigue is due to menopause so I’ve been on HRT to see if that helps - it hasn’t so far.

[Namebot]

That’s awful. Have you been on thyroid uk? They have a list of private endocrinologists who might be will to treat - not that you should have to do so.

[Battyoldbat]

It was a private endo I saw (through Bupa) although I found out afterwards her specialty is diabetes so I don’t know what interest she had in thyroid issues.
I will be going back to the gp soon to start the whole fight again but I just had to jump through their hoops first to show I’ve given the hrt a good try. It’s quite hard to have the energy to keep battling.

[NarcsBegone]

The unfortunate thing about ME is that you end up losing friends, it’s a very isolating condition to have. The awareness of it has grown a little in recent years but it’s very difficult for people to understand largely because when you see people it’s on your better days and so it seems that one day you’re fine but the next you’re not and this is often because of the energy you have expended in that one social occasion.
I was almost completely bed bound for two years (I’ve had it for 7) and I tried and tried to fight through it but one day it dawned on me that I was just making myself more ill and stopped trying to plough through and take it quite literally hour by hour. I’m now a lot better in many ways but still struggle terribly with the cognitive issues and am definitely ‘dumbed down’ I’m nothing like the bright switched on person I was. I also struggle with energy levels and hate that I’m not able to give Ds the same experiences that other children have. I want to start working again but I’m gripped with terror about it, I don’t know if I will be able to do anything, I’m scared that I will start work and just be Ill all the time and the knock on effects that will have on my life with Ds.
I have found a local support group very helpful but that can bring its own problems sometimes. Emotional stress causes crashes as much as physical stuff does. I don’t have energy or inclination for sex, I can’t drink, I cannot lose weight, I’m often snappy, depression is a thing now and my anxiety disorder has tripled, I’ve lost many friends because I couldn’t keep up with them or they got fed up or their lives just became so different to mine, sometimes I can’t drive, stuff I found easy before is so difficult now. As I say I’m much better than I was and my advice would be to rest as much as you need to, not resting does not help and to find a group that supports people with ME locally but not just on line and in real life too.

[Lionso]

Its very isolating as PP said. I have lost several friends since having this illness. I went from being the friend who would travel to visit others and drive everyone else around - to being the one housebound.
I haven't had a job for 5 years now, spend most days at home, a simple shopping trip for groceries is a big outing for me now.
People just vanish from your life.

I have been ill for about 5 years now, only now am I learning to pace myself. Resting today as I will taking my DS trick or treating later, and that will leave me completely drained.
I am lucky I have a very understanding DH. Unfortunately his family have zero understanding and sympathy.

[LilyLover]

I've very slowly and foggily read this thread and I wanted to say how interesting it is to hear of people's differing experiences of the illness. I've had ME for many years now, probably since my teens or even younger with viruses and Glandular Fever being involved in the onset. I've raged at the world, turned my frustration at so many losses in on myself and been through so many stages mentally and physically whilst trying to have some semblance of a life with ME. I'm groping towards acceptance and pacing properly now. for us all and for those of us who can tolerate it!

[Mummyoflittledragon]

I’m typing from bed. I spend most of my life in bed. Had a terrible year this year. I cannot work. I have now cut contact with my brother, who totally disbelieves my disability, has threatened violence because of it. He has also pushed me to the ground. Earlier this year, he drove his car away when I was leaning on it as I needed to. I couldn’t move and the car was preventing me from collapsing. As a result, I fell to the ground and was severely shocked. Dh called him a fucking cunt. Then brother said I was dead to him. We’d just buried my stepdads ashes btw and he couldn’t even keep a lid on it for that.

My mother is not much better. She and my brother had a disgusting chat about me after the event above -about how I’m not really ill. She only now (sort of) believes me because I posted her a copy of the private diagnosis after the incident at the interment. I say private diagnosis because I walked away from the nhs. The ME programme here is run by a psychiatrist. The only time I met him, he told me I must have been depressed. I went on antidepressants to cope with not being able to look after my dd(3yo at the time). I was too ill to convince him otherwise.

I have never shared the diagnosis with the nhs. There are far more than 250k. I am one of many, who doesn’t show up on the stats.

Looking back, my ME was gurgling below the surface for many years. It really started when I went on the pill as the protocol for ivf. Ironic that it made me ill as I’d taken the exact same pill 15years prior. After dd was born, I was very very tired. Then when dd stopped sleeping in the day, I stopped coping.

Yesterday I saw someone pushing an old lady along in a wheelchair. Clearly out for a walk and some fresh air. I was so envious of her situation. To just be cared for like that and pushed around. To surrender. A rug on my knee. I’d rather have cancer. And die. Or survive. And have treatment. Nothing can be worse than this living death. imprisoned in an ailing body.

We are totally forgotten. Seen as irritants and scum. Nothing serious when our whole lives are ruined. And of course, our illness isn’t serious. Ohhhh nooooo.

I am the living dead.

[CreativeMumma]

I’ve had fibromyalgia since my early 20’s. I second looking up the spoon theory.

[SealSong]

I read/heard that there is a school of thought that many cases of CFS/ME are in fact undiagnosed chronic Lyme disease.
Don't know if anyone on here has any thoughts on that?

[TammyswansonTwo]

I think a lot of people with ME are misdiagnosed, under-tested and under-treated. It's a disgrace.

[Lionso]

for Mummyoflittledragon and everyone else suffering with this illness.

When I first got ill, many of my symptoms were the same as MS. I went through many tests with my GP convinced that is what I had. Eventually I was cleared and I'm thankful I do not have MS... but I am just as disabled as many with MS are but receive zero help or understanding. I am not comparing the two diseases, but how they are treated so differently. Hope that didn't sound harsh my brain fog is making typing coherently hard today.

[Floralnomad]

I must say this thread has spurred us into action . My dd has coeliacs and CFS but we have a massive family history of auto immune problems . My mum has had Addison’s for 50 years and is hypothyroid . I’ve been hypothyroid for about 20 years and after being seriously ill for the last 6 months have just had a diagnosis of either primary adrenal failure or Addison’s ( still waiting on one blood result) , my dsis has recurrent polymyalgia . When I next see my endo in December I’m going to ask him to see dd privately and do cortisol and thyroid function tests just to check that she’s not headed down this well trodden path .

[TammyswansonTwo]

You can get private blood tests done yourself if you wish - I've just ordered my second home testing kit, just done with a lancet and finger prick, checks various thyroid levels and thyroid antibodies

[Battyoldbat]

The issue with the private tests that I’ve had is that the GP and (private) endo I saw just flatly refused to take any notice of them or repeat their own as theirs had been ‘normal’. Insanely frustrating. It has spurred me on too to make yet another appointment to go through it all again though. I shouldn’t be so tired I can’t walk around a supermarket without it affecting me for the next two days.

[Mummyoflittledragon]

Thank you Lionso. Think I’m having a bad day. Threads like this hit a nerve, which is why I mainly steer clear.

[Mummyoflittledragon]

I should have mentioned too. To you and everyone suffering.

[Floralnomad]

That’s why I think I need to speak to my Endo first so that I can get him onboard .

[WiseDad]

NHS diagnosis is rather poor. I fell ill during a busy period at work and went from full functioning high recall of complex material to zero recall and no idea what to call simple household objects in the space of three weeks. NHS GP appointment lead time was three weeks, normally I don't bother booking as i will be better but this time it stuck. Went private via my employer's in house GP service to see a consultant under medical insurance that comes with work. Consultant ordered every blood test on the sheet. He must have thought it necessary as I might have CFS. All come back pretty much normal except for liver enzymes and wbc. Diagnosis follows in a matter of days with some advice. Health insurance doesn't cover chronic conditions though.

NHS doctor appointment I went to for a second opinion. Orders a few tests. All negative so orders some more. Discovers my liver enzyme elevation at 110% of normal range and he decides I have liver failure, usually accompanied by 2x to 5x normal level. Asks me about sexual practices, drinking, drug taking (normal, none really, none at all) but still sends me for a liver scan which is completely normal. I gave up at this point as it was silly.

Diagnosis by exclusion means eliminating all the other options and this means expensive tests that the NHS isn't mentally equipped for if you are not actually in hospital and dying.

In the end I recalled a decent GP at our local practice and forced an appointment with her. I refused to see any other doctor. She got it immediately and referred me to the local CFS centre. They are all GET and CBT which isn't that helpful as it treats the problem as a mental one rather than a biological one. I am reading recent articles on CFS to challenge more effectively on my next visit. My BA and first masters are in biochemistry so when my brain is working I can read this stuff as well as the next person.

After three years of gradual recovery I am now at work full time but have no capacity at all for other stuff in life. Everything is made into a routine to avoid me mucking it up and everything is simplified and made as low energy as possible to allow me to cope as I am effectively a single parent.

I am lucky enough to have an excellent employer (plus they need me as my skills are hard to replace and replicate which makes it even better) and money to work through the problems and get help for cleaning etc.

It is a devastating illness and, honestly, when I first got it I didn't think it was the right diagnosis as ME is yuppie flu. The appalling lack of rigour, work and prejudice from the medical profession has blinded many to this and these impressions stick with people for a long time.

Am reading Osler's Web at the moment which is a great book on the history of the US outbreaks and missed opportunities. The prejudice and preconceived opinions of a few people have made lives harder for millions. Remember this when someone brands someone else a "denier" or a proponent of false news as this is exactly the prejudice that CFS/ME doctors and researchers got from the late 80s onwards as one view, the wrong view, was pushed above all others.

I see the BFI is showing the movie on Weds next week at 21.30. Am going to try to make it even if it means a few tears of shared pain and having to splurge on an Uber (if loony Kahn hasn't banned them completely by them which will be a disaster and a huge hit on my personal mobility)