I have Chronic Fatigue Syndrome, AMA!

[pannikin]

As the title says, I have CFS/ME. Ask me anything!

[InMySpareTime]

I'm getting nowhere trying to convince my GP to put me in Group 6 for a Covid vaccination.
GP says they can't add me until JCVI lists ME/CFS explicitly in the Green Book

JCVI say Neurological category says not exhaustive and GPs should use their judgement

CCG says they don't deal with patient enquiries

Councillor contacted CCG for me but was told it's up to GPs


Meantime I'm stuck in the middle while people less vulnerable than me get their jabs. I can't catch Covid on top of how ill I am already, it would break me.

Any ideas where else to turn to get vaccinated, or shall I just stay in until Autumn?

[Decisivelyindecisive]

Sending spoons I was diagnosed with ME/CFS about 6yrs ago after years of suffering. It had been around 5years of being told i was just tired from pregnancy / small kids / disabled kids etc before they sent me to a local CFS clinic and after some sessions formally diagnosed me but said there was nothing they could do.

I had a huge relapse in 2017 that came on within hours and my husband and parents thought i had had a stroke as i became unable to walk, then speak coherently or move my body. I was terrified. Thankfully it only lasted a few days then recovery for a few months. It pushed me to self fund some private tests and appointments which wiped us out financially but unveiled some issues the NHS has missed. These are now treated and my quality of life has improved dramatically. I still get fatigued daily, have to pace myself etc but can function fairly normally. I cannot work sadly as that with caring with 4 children just would be too much. My daytimes are spent resting mostly

[pooopypants]

Can I ask how long your diagnosis took and who you ended up seeing to diagnose you?


I was diagnosed with fibromyalgia a few years ago and CFS has been considered (pre lockdown #1) but the pathway for that since put on hold

[VirtualLearning]

It’s strangely comforting to read a thread where people understand CF and I didn’t know people suffering from it might be prioritised for a Covid vaccine, that is heartening it is being understood more.

OP have you ever heard of possible links with past trauma? As this has been my biggest breakthrough in my own journey with CF and I dismissed the link when first told about it by a doctor a while ago as thought i hadn’t suffered any severe enough until realised because I’m highly sensitive I had. So I tried hypnotherapy to process a stressful time I had as a child and it’s the first thing in many years that has made a proper difference. I am even going on long walks again and until then attempts at exercise made me much worse.
It’s worth googling the link as there are lots of articles, this is the one that helped me:
chronicillnesstraumastudies.com/how-understanding-trauma-is-making-sense-of-my-chronic-illness-and-helping-me-heal/

[Hazelmazel]

I also came on to mention b12 deficiency. It's commonly misdiagnosed as CFS. And 'normal' levels in this country are set woefully low, so even if people are told their b12 is normal, it's worth finding out the exact level or even having an active b12 test (more accurate but more expensive so not routinely offered on NHS).
I have been struggling with pernicious anaemia (which causes b12 deficiency) for several years and my main symptom is chronic fatigue which is exacerbated by exercise. Waking up exhausted, even after a full nights sleep.
I treat myself now with b12 injections and am dramatically improved from where I was a couple of years ago.

[SweetRuby]

Hi, I have no question, I just wanted to come and support you. I have severe fibromyalgia. The pain can be awful but I have to say it's the chronic fatigue that gets me the most. I have episodes where the tiredness is extreme and climbing the stairs leaves me breathless and taking a shower leaves me exhausted. Thankfully I don't have it all the time like you, but most days I have to rest because it feels like my body is going into shock, tremors all over, burning and pain. The only way to ease it is if I put in ear plugs and eye mask and rest up. Even watching t.v. is too much work. At least though once I rest I'm usually ok for a few more hours. Can't imagine what it's like having it 24/7 or doing it with young children. It's a horrible condition and I hate that it's dismissed the way it is.

[Italiangreyhound]

InMySpareTime

"What do you reckon are the chances ME sufferers will be offered the COVID vaccine? I have a battle each year trying to convince the GP that I'm entitled to a flu jab, under the Chronic Neurological Condition category."

meassociation.org.uk/2020/11/covid-19-vaccine-developments-me-cfs/ May be of interest...

[ColourMagic]

@heydoggee ... no one with ME/CFS should still be facing disbelief and accusations of laziness or of just being 'weak'. And ME is not depression. Depression is a serious medical condition but is not ME/CFS, and it is not a symptom or precursor of ME/CFS. So people telling you that you have depression when you don't is gaslighting, it's abusive.


These short slides spell out what ME/CFS is and why people with ME/CFS cannot and must not push themselves. Even the first 3 slides should spell out that ME/CFS is a serious biomedical disease, and that accusations of laziness are just not on.

Sorry I cant just copy the content of the slides here, but they are very readable on the link.

Physios for ME:
www.physiosforme.com/seven-slides-for-physios

[heydoggee]

I have CFS too but am struggling to get anyone in my family to accept that I am not lazy, depressed or weak. It's a daily struggle. How do you describe your struggles so people understand?

[ColourMagic]

@InMySpareTime ... I know, I know. ME has been in the Neurological Chapter of the WHO International classification of Diseases since 1969, and is still under Neurology in the most recent edition, yet still too many NHS doctors think they can just ignore the WHO Classification. It's just a dire state of affairs.

There are records from the All Party Parliamentary Group for ME of Health Ministers stating that ME should have parity with MS and MND
for treatment and research funding . I had a look to find those statements but they are buried in pages of transcripts.


Do you know about Physios for ME? Chartered Physiotherapists who are educating UK health professionals about ME.

Their site is not too big, and includes material on pacing, on why GET should not be advised by health professionals, some material for Long Covid, and an hour long course on ME for Doctors and other health professionals, they can earn CPD credit (NHS training credits) by doing it.

www.physiosforme.com/

For patients:
www.physiosforme.com/resources-for-people-with-me

Course on ME by Dr Nina Muirhead for Doctors and other Health Professionals
www.studyprn.com/p/chronic-fatigue-syndrome

[JustLikeStitch]

Two questions (both personal so please please don’t feel you need to answer!) Did you have a diagnosis for this pre children, or is it something that developed post childbirth?

Do you find a lot of ignorance and judgement around having CFS?

I have an aunt with it who was diagnosed when her DC was 3 (doctors couldn’t tell her if childbirth had contributed to it as her symptoms seemed to start during pregnancy and get progressively worse post childbirth). She is also constantly called some choice names by other family members who view her as excessively lazy, though thankfully she’s chosen to go NC with them over it!

I really hope that some form of treatment is developed for it, from what I’ve seen it’s far from an easy life

[InMySpareTime]

[quote ColourMagic]@InMySpareTime ... The ME Association have written some stuff about eligibility of ME sufferers to be high priority for Covid vaccination.

meassociation.org.uk/2020/12/covid-19-vaccine-eligibility-safety-and-me-cfs-what-we-know-so-far/

'COVID-19 vaccine eligibility, safety and ME/CFS – what we know so far'

'ME/CFS should be included in the ‘underlying health conditions’ list – as it is classified as a neurological disease by both the WHO and NHS England:

And COVID-19 will almost certainly exacerbate pre-existing ME/CFS symptoms or cause a relapse of ME/CFS.

However it looks as though people on this list will only become high priority once the over-65 age group has been vaccinated.

So it seems unlikely that people with ME/CFS below the age of 65 will be offered a COVID-19 vaccine until March or April next year – but it could be sooner if supplies of the Oxford/Astra Zeneca vaccine are approved and released

We will continue to update you on what is happening in relation to all aspects of COVID-19 vaccines and ME/CFS.'[/quote]
It's the should be in that statement that requires all the battle!
Because it's not specifically listed on the few examples of Chronic Neurological Conditions some GPs say it doesn't count.

[ColourMagic]

@InMySpareTime ... The ME Association have written some stuff about eligibility of ME sufferers to be high priority for Covid vaccination.

meassociation.org.uk/2020/12/covid-19-vaccine-eligibility-safety-and-me-cfs-what-we-know-so-far/

'COVID-19 vaccine eligibility, safety and ME/CFS – what we know so far'

'ME/CFS should be included in the ‘underlying health conditions’ list – as it is classified as a neurological disease by both the WHO and NHS England:

And COVID-19 will almost certainly exacerbate pre-existing ME/CFS symptoms or cause a relapse of ME/CFS.

However it looks as though people on this list will only become high priority once the over-65 age group has been vaccinated.

So it seems unlikely that people with ME/CFS below the age of 65 will be offered a COVID-19 vaccine until March or April next year – but it could be sooner if supplies of the Oxford/Astra Zeneca vaccine are approved and released

We will continue to update you on what is happening in relation to all aspects of COVID-19 vaccines and ME/CFS.'

[ColourMagic]

"Are there medical consultants specifically for CFS?"

There should be, but in the NHS there are not. There used to be NHS ME medical clinics in the 70's and 80s, with specialists, not many, but they took referrals. That stopped during the 90's when a kind of land grab took place whereby a group of UK psychiatrists 'claimed' ME, preferred to call it CFS (a name that can be confused with the common symptom of fatigue which is a symptom of many diseases and conditions) ..... they created a new diagnostic criteria which was so wide that just about anyone who experienced tiredness could have it (The Oxford Criteria).

The new criteria created a 40% misdiagnosis rate. That's people who were wrongly and often casually given an ME or CFS diagnosis but who suffered from other (often treatable) conditions including Crohn's disease, Coeliac disease, primary heart conditions, MS, major depression and more, who were left without treatment for their actual disease.

The psychiatrists who had 'claimed' ME asserted that ME (CFS) was merely deconditioning and false beliefs by deluded patients.
So, the Graded Exercise was designed to recondition, the CBT was designed to convince physically sick people that they are not physically sick . This was initially asserted with no research or other evidence whatsoever.

The flagship research (The PACE Trial) which claimed that ME or CFS sufferers 'recovered' by graded exercise and CBT has been exposed as so flawed that it should never have got through peer review, and is described by Carol Monaghan MP as "One of the greatest medical scandals of the 21st century."

So we lost 30 years during which biomedical ME research was not funded in the UK, all public research funding going to CBT GET (graded exercise).

The so called CFS clinics offered CBT/GET and rarely anything more. Some individual therapists in the CFS clinics went against their training due to realizing that the Graded exercise was making their ME sufferer patients more sick, taking them from mobile to bedbound too often.

We could and should have had experienced ME medical specialists in every hospital. We hope that will take place in the future but much of the expertise of the 70's and 80's specialists was not passed on and has been lost.

So the significant research is done outside of the UK. It all needs more funding but there is hope and top medical researchers worldwide are on the case.

[InMySpareTime]

I also have ME/CFS, and while lockdown has been challenging it's not much different to the limitations I had before.

What do you reckon are the chances ME sufferers will be offered the COVID vaccine? I have a battle each year trying to convince the GP that I'm entitled to a flu jab, under the Chronic Neurological Condition category.

[LifeBeginsNow]

That is interesting. I will now be reluctant to push myself as it's probably detrimental.

[ColourMagic]

The National Institute for Clinical Excellence (NICE) is right now making a new Clinical Guideline for ME, or ME/CFS.

The Draft of the new Guideline makes it clear that NICE no longer recommends Graded Exercise or CBT as treatments for ME/CFS. The Draft Guide states: .....

"Do not offer people with ME/CFS any therapy based on physical activity or exercise as a treatment or cure for ME/CFS [or] any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy.”

The Draft is out for Consultation atm, and will be published next spring.

It has taken since the first NICE guideline of 2007 to get damaging Graded Exercise removed from the NICE Guide.

[cactusisblooming]

Is it an actual medical diagnosis? If so did you find it difficult to get the diagnosis? How long did it take?
I've come across so many women on social media who have fibromyalfia/CFS (by chance) and some of them seem much more active than me, it makes me wonder if they have self diagnosed or were actually diagnosed by a HCP.
Are there medical consultants specifically for CFS?

[stella1know]

Is there any link with Vitamin D, eg does high strength 20,000 units help, or St Johns Wort? Just wondering if there is any link at all.
I would like to read up on inflammation.

[Jackabobbo]

I have a similar condition - it's genetic but chronic pain and fatigue are the main symptoms.

One thing I've noticed is it seems very linked to my mental health. Actually seeing a counsellor, a really good one, for talking therapy, helped me a lot I feel.

It's very hard to say as symptoms come and go, and I can be fine for ages and then have a flare up, but I do think trying to keep mentally healthy helps. I have to be careful about what I eat as I have a lot of dietary restrictions due to my condition, but within those restrictions I am doing my best to eat a healthy diet, and to maintain a sensible weight (my problem is usually being underweight rather than overweight). And though there are days I can't manage it, when I can I will try to always go for a walk each day. Even if it's a very, very short walk - I'm talking 2 minutes short. Small things like this help I think. Trying to keep a good sleep routine too - though this is something I particularly struggle with!

It's very hard to live with this type of illness. Partly because the symptoms themselves are hard to manage at times, and partly because it is so "invisible" with little real awareness so it's not uncommon for people to think you're making it up, or exaggerating.

[Italiangreyhound]

The specialist we spoke to mentioned supplements, I am glad I saw your post sweetkitty as I will look into this properly before just buying some pills. It was a phone consultation and no prescription. We have a face to face consultation soon.

Thanks for mentioning this.

[sweetkitty]

A close friend and her teenage DC suffer from this (I have fibromyalgia so have a little bit of an understanding of what you are going through).

Have you read about the effect of vitamin B12 on CFS? Supplements give false readings in blood tests so GPs think your B12 is fine but your body cannot use the B12. You have to be off all supplements for 4 months to give accurate results. Then if you are found to be deficient GPs will only give 3 monthly injections (tablets are useless) which have been proven not to be enough. A lot of people are now buying vitamin B12 from abroad and self injecting (it’s legal to buy it in Europe, it’s a safe vitamin).

They are finding that a lot of their CFS/ME symptoms are disappearing as they have been incorrectly diagnosed. I’m not saying that’s what it is for everyone or it’s a magical cure but it’s worth looking into and having blood tests done. I do think we don’t realise the importance of these vitamins on our diets and lack of.

I am shocked and saddened by the lack of support for people with your condition and the assumption that’s it’s all in your head or take some anti depressants view that some HCPs seem to have. I really really hope they find a cause and therefore a cure soon.

[Italiangreyhound]

pannikin I am so sorry to hear this. My dd is 16 and it looks like may be suffering from chronic fatigue and chronic pain. Has depression, anxiety and also hypermobility.

Any advice at all would be most welcome.

80sColourfulChristmas I am so sorry to hear about your situation too.

Are there any experimental treatments, research I should be looking into etc.

[DianaT1969]

Anecdotally, on my FB groups for optimum health (intermittent fasting etc) there are people trying to reduce inflammation (and maybe lose weight too). That is to say people with this, fibro, Hashimotos and other inflammatory conditions are trying to to improve their gut health. Some mention depression and anxiety too.

[80sColourfulChristmas]

@SD1978

Were you ever medicated for depression as a teenager? I've noticed there seems to be some correlation, with depression and medication in teenagers who go onto develop CFS although this is purely anecdotal and not scientifically researched by me.

I was! At 17. Although my symptoms began at 13