ME Foggy Dog 💙 @MEFoggyDog Twitter profile | Pikagi

Pikagi

ME Foggy Dog 💙

@MEFoggyDog

6,789

Followers

4,255

Following

13,376

Media

66,992

Statuses

Award-winning #socialenterprise in #UK . Working for #socialchange for the #MECFS community. Linktree -

UK

https://t.co/DZlzI9K6d3

Joined July 2014

Don't wanna be here? Send us removal request.

Pinned Tweet

@MEFoggyDog

ME Foggy Dog 💙

2 years

Let me introduce myself..... I am Foggy's P.A and MD/Founder of @StripyLightCIC . Foggy's Followers crowdfunded Stripy Lightbulb's start-up costs back in 2018. Thank you for your ongoing support and for believing in me💙🙏 #socialenterprise #PwME #MEcfs

Tweet card media

I'd like to introduce myself.....

Sally Callow is Foggy's P.A and MD of Stripy Lightbulb CIC (stripylightbulb.com).Stripy Lightbulb CIC's start-up costs were crowdfunded by PwME and allies. T...

www.youtube.com

1

14

57

Last Seen Profiles

@ApexFB

@mnydwwwww

@sujing110

@HesterKate52601

@newlyxprod

@dul_turkporno

@MARCOPOLOTOTTI

@tk_youki

@BloxFruits

@fgasking

@plum_iK

@rayvone0227

@SiYyn_1303

@roxiecharchian

@Kevinjsc9308

@robson_smj

@tandsaet

@BossFightersX

@squriby01

@tsubametaxi_ngy

@GaLakeSports

@samaberman

@senn_nin_

@tudiosamariela

@s_otani_brass

@tk_numanch

@PoojaThakur0

@KebriaaOntha

@crot_ayo

@LunaNoona_GB

@delicatoshi

@hassouni1611

@sand_high

@thatfilokiddo

@takyyxd

@raimutonsena73

@MEFoggyDog

ME Foggy Dog 💙

10 months

Dear oh dear. GP pointed at my mask and said 'Are you worried about COVID? Me - 'I'm vulnerable' GP- 'There's really no reason to worry any more. Everyone has built up a decent level of immunity with vaccines and infections'. My eyes rolled secretly and the mask stayed on. 1/

8

189

3K

@MEFoggyDog

ME Foggy Dog 💙

10 months

This @covidinquiryuk witness has nailed it. She has just been asked why there is a reluctance to acknowledge that #COVID19 is airborne. She has 4 reasons. The main one IMO is that the responsibility then moves from the individual to the organisation - it's no longer a case of 1/

7

436

2K

@MEFoggyDog

ME Foggy Dog 💙

10 months

#NHS do better!! Accept that there are people who are at risk but the JCVI have not made them eligible for vaccines. My last vaccine AND last infection were in Dec last year. How 'immune' am I now'? 🤯 2/2 #pwME #MEcfs

3

35

710

@MEFoggyDog

ME Foggy Dog 💙

10 months

'please wash your hands' to keep yourself safe. Well said 👏 @NHS - are you watching? (listening!)

1

56

510

@MEFoggyDog

ME Foggy Dog 💙

9 months

Spoke to a GP yesterday - work related Them- 'The vast majority of Long Covid cases recover. Did you know Long Covid has a number of similarities with M.E/C.F.S?' Me - 'At the 1 year point after acute infection around half of Long Covid cases meet M.E criteria. There are 1/

9

59

428

@MEFoggyDog

ME Foggy Dog 💙

9 months

now 1.25 million people who meet M.E criteria in the #UK '. Them - 'Oh, I didn't know that'. One person at a time M.Eeps. One person at a time. #pwME

2

27

377

@MEFoggyDog

ME Foggy Dog 💙

6 months

I needed to say this 👇 Comment on Steven Bartlett's LinkedIN post. It's getting murkier and murkier. #pwME #MEcfs #DragonsDen

Tweet media one

31

62

338

@MEFoggyDog

ME Foggy Dog 💙

3 years

Can we stop saying this please? 'I have no choice but to 'push through', I can't afford to give up work.' Can anyone? No one 'chooses' to leave employment due to being sick. When you reach a certain level of severity- you have no choice. #pwme

6

52

321

@MEFoggyDog

ME Foggy Dog 💙

11 months

@ruskin147 😂 Soon, she will refuse to 'get off'!

3

1

258

@MEFoggyDog

ME Foggy Dog 💙

11 months

I mentioned this at one of the meetings I attended yesterday. Palliative care needs to be routinely available to people living with very severe M.E. As the quality of life is equal to late stage cancer/renal failure there is clearly a need. Though obviously 'care' would likely

15

47

253

@MEFoggyDog

ME Foggy Dog 💙

3 months

Update. GP 'felt something'. Now on non-urgent pathway (still has 14 day target). By the time I got home I had a text to confirm an appt at the Breast Clinic at the end of the month. The difference in 'care' always astounds me. This is the moo who set this ball rolling 👇🥰

Tweet media one

@MEFoggyDog

ME Foggy Dog 💙

3 months

Thank you to all who responded. Sent e-consult at 8.00 Mentioned Maggie possibly detecting something. Received this just now. Excellent. #pwME

Tweet media one

13

3

68

37

4

203

@MEFoggyDog

ME Foggy Dog 💙

12 days

Two observations from the inquest proceedings so far. 1 - The GP, who is rightly being treated with dignity and compassion and not being forced to appear to give evidence, has received more dignity and compassion than Maeve did. 2. The GP 'stand in' keeps saying he's not a 1/

4

34

199

@MEFoggyDog

ME Foggy Dog 💙

10 months

Note to newly chronically sick people. Do not EVER offer unsolicited advice to a #pwME on how they should try to get better. Particularly when that person has been sick for 15+ years and you have ZERO clue about what they have tried over those years to 'get better'.

6

22

192

@MEFoggyDog

ME Foggy Dog 💙

4 months

In other news.... A NHS dept wants to adhere to the M.E NICE guideline and want to chat about 'evolving' their service accordingly. These AWESOME people DO EXIST. We need MANY more of them though! #Cymru #pwME

10

38

190

@MEFoggyDog

ME Foggy Dog 💙

2 years

My tolerance levels are low today. Today, I will not tolerate M.E being excluded from the LC conversation. Some days I can bear to be excluded and further stigmatised. Today is not one of those days. #PwME

14

12

183

@MEFoggyDog

ME Foggy Dog 💙

7 months

@ITV @Suej1959 I emailed Little Gem yesterday about a M.E-related scandal. Can I also contact you direct?

2

6

176

@MEFoggyDog

ME Foggy Dog 💙

1 year

What do we think a 'M.E specialist' is? I have seen Dr Weir privately. He- - took a full medical history - Dx OI, ruled out POTS - explained clots - gave me a 'treatment plan' ie supplements. - gave me general advice re management. Is a clinic that doesn't recommend GET 1/

15

17

172

@MEFoggyDog

ME Foggy Dog 💙

12 days

M.E specialist. There are no M.E specialists in the NHS - that's part of the problem. #pwME #MEcfs

3

17

170

@MEFoggyDog

ME Foggy Dog 💙

10 months

@GeckoComms Pharmacist said 'you're not on the list but as M.E is neurological I'm happy to give the flu jab to you'. No one will give me the covid booster. I've asked...multiple times.

2

6

162

@MEFoggyDog

ME Foggy Dog 💙

4 months

There will be some people who say 'they aren't that sick....they are protesting!!' 1. If we don't protest who the hell will stand up for #pwME ? 2. Most of us will face serious consequences from taking part in this #BringMillieHome online protest. We will be extra sick for days+

7

58

159

@MEFoggyDog

ME Foggy Dog 💙

2 years

I saw this being discussed yesterday and find it 🤯 When chronic illness relating to #Covid19 first appeared- 'I've never heard of post viral illness before...I'm angry...why was I not told? #PwME (including myself)- 'We've been campaigning and raising awareness on this 1/

3

29

156

@MEFoggyDog

ME Foggy Dog 💙

4 years

I am sick of hearing 'I need to work, I don't have the luxury of being able to stop'. Do you really think any person with a #DisabilityCoalition or chronic illness has that luxury? We do not CHOOSE to stop. Our bodies FORCE us to stop. #pwme #health

7

23

154

@MEFoggyDog

ME Foggy Dog 💙

5 months

I just asked my Dad what he would think if he heard that I, as a #pwME , had 'effort preference'. He said - 'that you have a choice. That you are choosing this'. That is, I believe, the problem with this phrase. Why fund this stigmatising nonsense @NIH ? Why? #pwME #MECFS

@coco_chatel

Olena ‘Olenka’ Sayko

5 months

What the fuck is “effort preference?”

14

9

122

3

23

153

@MEFoggyDog

ME Foggy Dog 💙

1 year

Sat in a 'breakout room' with 15 third sector orgs who deal with disability. Someone asked what #MEcfs is. 4 others said 'glad you asked, I didn't know that'. Pardon? Working hard to make M.E/CFS mainstream but have a long way to go! #pwME

5

19

150

@MEFoggyDog

ME Foggy Dog 💙

6 months

🤷‍♀️ Bizarre situation I've heard about multiple times and patients face real life implications. There are no 'M.E specialists' in the NHS. 'Specialists' tend to be retired/private Drs. Severe M.E patients reach out to specialists and ask for help regarding inadequate/ 1/

6

16

147

@MEFoggyDog

ME Foggy Dog 💙

2 years

GP just now ' I'm seeing a lot of Long Covid. NHS will crumble because of it'. Yes. That's why it needs to be taken seriously and preventative measures taken.

3

23

144

@MEFoggyDog

ME Foggy Dog 💙

6 months

There are 'receipts'. This clip backs up EVERYTHING the M.E community have been saying for the past 10 days - using the words of Dragon Peter Jones- Compare the pitch/outcome of the back pain entrepreneur with that of Acu Seeds.- @BBCDragonsDen , 1/

@ABrokenBattery

Adam

@ABrokenBattery

6 months

Highlights of a #DragonsDen episode where @dragonjones explains why he didn't invest in a back pain reliever because there was no clinical research to back up their medical claims. Would be interested to know if/why this level of scrutiny wasn't applied to acuseeds?

26

83

355

5

31

143

@MEFoggyDog

ME Foggy Dog 💙

2 years

An M.E patient I know has been seeing a therapist to tackle her anxiety about covid and shielding. The therapist encouraged her to immerse herself in society to break the cycle. The #pwME did just that but carefully. Guess what? Now Covid positive.

7

22

139

@MEFoggyDog

ME Foggy Dog 💙

1 month

I have treatment envy 🤷‍♀️ After 2 months of symptoms, my dad was diagnosed with an autoimmune disease on Monday and put on steroids. 36 hrs later.... Pain-free and full of the joys of spring. 18 years of M.E- I've never experienced that. (Ps. Happy for him 😍) #pwME

9

4

143

@MEFoggyDog

ME Foggy Dog 💙

2 years

I'm sorry but whether Will Mellor has a cold, flu, or covid he should not have danced tonight. 'Pushing through' is ridiculous and how many others will now get what he's got? Slow hand clap @bbcstrictly 👏

2

5

138

@MEFoggyDog

ME Foggy Dog 💙

1 year

'specialist'? IMO no. We need to raise our expectations as a community. We need #NHS staff who fully understand the nature and history this disease and don't 'just' avoid contraindicated 'treatments'. Stop being 'grateful' for substandard 'care'. #pwME #MEcfs

5

15

140

@MEFoggyDog

ME Foggy Dog 💙

1 year

Shame on you @guardian Your article is stigmatising harmful nonsense. There are now an estimated 1.25 MILLION cases in #UK and this article demonstrates that this psych narrative is all about £££. Replace M.E with M.S or Parkinson's in your article- just as offensive. #MEcfs

6

24

138

@MEFoggyDog

ME Foggy Dog 💙

7 months

Do you think the Dragon's Den 'issue' has raised awareness of #MEcfs ? I don't. The reach of @BBCDragonsDen is 100x bigger than those who have commented/engaged on social media. This is not a 'good' thing. #pwME

8

11

138

@MEFoggyDog

ME Foggy Dog 💙

2 years

Heard feedback from long COVID clinic staff this week. Some patients are refusing to accept their #MEcfs / #MyalgicEncephalomyelitis diagnosis. Associated stigma could be a factor but I'm wondering if misinformation about the disease is also an issue. This adds further stigma 1/

12

16

131

@MEFoggyDog

ME Foggy Dog 💙

4 months

Millie is one of four very severe M.E patients (that the community is aware of) who are currently receiving poor/inadequate 'care' in NHS hospitals (England). We need change and we need it NOW. #DontLetMEDie #BringMillieHome

2

62

129

@MEFoggyDog

ME Foggy Dog 💙

3 years

Still struggling after the jab. Phoned the endocrinology dept at my local hospital to rearrange today's appt as I'm not up to it. 'It's ok, we know how bad Long Covid is, we can spare you the trip to see us. I can offer you a phone appt instead'. I've NEVER had this with M.E

5

9

129

@MEFoggyDog

ME Foggy Dog 💙

3 years

An M.E friend is getting married 🎊🥂 There is hope for us all. Her 1st husband couldn't cope with her 'severe' M.E. They divorced. Felt she would never be loved again. Still sick but 'moderate', she is loved and is getting married today. I am so happy for my friend 💙 #pwme

7

6

127

@MEFoggyDog

ME Foggy Dog 💙

6 months

Just me? Anyone else surprised at the number of Drs who are speaking out against Acu Seeds/BBC/false claims? Very welcome and delightful surprise 🙏 #pwME

10

5

127

@MEFoggyDog

ME Foggy Dog 💙

1 year

The word used is 'fatigue'. But there is no word in the English language that adequately represents what this 'characteristic' feels like in M.E. When #pwME say 'fatigue', it's not the same as what you describe as fatigue. #MEcfs

19

25

123

@MEFoggyDog

ME Foggy Dog 💙

3 months

How much coverage gave you given Myalgic Encephalomyelitis this week @thismorning ? 1.25 million people meet M.E criteria in the UK. Why are we always at the bottom of the list of all illnesses whose awareness week/month is at the same time? #MEAwarenessWeek

5

36

123

@MEFoggyDog

ME Foggy Dog 💙

6 months

Open letter to @VictoriaAtkins Please add your name via the link. Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.) #pwME #SevereME #MEcfs #JournoRequest

Tweet card media

Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.) - M.E....

Add your name:

organise.network

18

67

122

@MEFoggyDog

ME Foggy Dog 💙

6 months

Ableist nonsense on @GMB 'Being positive' doesn't increase chances of recovery. 'I had cancer, I worked through it, I stayed positive'. Good for you. Those that can't aren't any 'less than'. Ill health is seemingly only acceptable if the person stays positive. #GMB

5

10

121

@MEFoggyDog

ME Foggy Dog 💙

3 years

We keep being told by some Royal Colleges that some #pwme have benefited from GET. I have never, in 7 years of advocacy, 'met' any. So. If you had M.E, did GET, and got better as a result- please DM me. I need to see this for myself. #UK #health

19

30

122

@MEFoggyDog

ME Foggy Dog 💙

6 months

Yet another severe M.E patient has opted for euthanasia due to there being NO TREATMENTS OR CURES for M.E.... the @BBC @DragonsDen have STILL not apologised or acknowledged harm. Go gently Lauren, I'm so sorry the healthcare system could not help you 🕊💔🫂 #DragonsDen #pwME

5

22

121

@MEFoggyDog

ME Foggy Dog 💙

6 years

@pdmcneely Ahhh. I broke my arm when I was 5. The A & E staff also put a plaster cast on Tiny Tears arm. 😊

0

0

113

@MEFoggyDog

ME Foggy Dog 💙

4 months

There have been numerous groups of #pwME and advocates working hard for Millie over the past 8 weeks. A breakthrough has hopefully been made today but I think we need to acknowledge the efforts of ALL who have helped in the past. You know who you are 👏🫂💙 #SevereME

2

25

118

@MEFoggyDog

ME Foggy Dog 💙

3 months

Oldie but a goodie. #MEAwarenessDay #ExposeMENow

Tweet media one

0

35

114

@MEFoggyDog

ME Foggy Dog 💙

3 years

I'm echoing the words of other #pwme . Please don't give up. Feel and acknowledge your hurt and anger. Speak to other pwme or helplines but know that we will get through this as a community 💙 It hurts, I know. I'm feeling a wide range of strong emotions myself x #mecfs

2

17

113

@MEFoggyDog

ME Foggy Dog 💙

2 years

Anyone else gobsmacked at the number of people who have tweeted variations of- 'I had CFS years ago, I was bedbound for a year, it was a long hard road but I'm fine now' in the past 2 and a half years? Who knew that our recovery rate was so high! (Detect the sarcasm) #pwME

33

4

114

@MEFoggyDog

ME Foggy Dog 💙

1 year

I made sure M.E was included in this meeting. 💙 #PwME

@SteveBarclay

Steve Barclay

1 year

Our new Major Conditions Strategy will set out a bold plan to improve outcomes for patients in the biggest diseases like cancer & dementia. I was delighted to host patient representatives & health system leaders @DHSCgovuk yesterday to discuss how we can deliver this together.

Tweet media one

Tweet media two

Tweet media three

174

18

67

16

11

114

@MEFoggyDog

ME Foggy Dog 💙

3 years

It makes no sense to me that these animals haven't yet been put in cargo on one of the evacuation flights. Inc. 50 service dogs- they served YOUR country. They aren't just a PR exercise when they are given medals. Help them, please. #OperationHercules #KabulSmallAnimalRescue

@gsrescueelite

German Shepherd Rescue Elite ( GSRE )

3 years

@KSAnimalRescue @USMARCENT @SecDef Many of these dogs served YOUR country, what are you going to do? Don't let the MOD be the only heroes in this story, you can play your part, they only need cargo space and are already at the Airport.

9

185

243

5

101

106

@MEFoggyDog

ME Foggy Dog 💙

1 year

The global Myalgic Encephalomyelitis patient community has tripled, if not quadrupled, due to the #Covid19 pandemic. Many under #LongCovid ☂️ Estimate-one million cases of M.E in #UK now Only around 5% ever fully recover. Context - 130k M.S cases in UK #LongCovidAwarenessDay

Tweet media one

2

40

110

@MEFoggyDog

ME Foggy Dog 💙

2 years

I don't know if I can do this anymore. #pwme

30

0

110

@MEFoggyDog

ME Foggy Dog 💙

2 years

ANYONE, ANYWHERE, AT ANY AGE, can get chronically sick from any virus. Hint - viruses don't care that you eat a healthy diet or go to the gym 5 times a week. Viruses can be life changing and the narrative that everyone gets sick for a week then recovers needs to change. 4. End

0

32

108

@MEFoggyDog

ME Foggy Dog 💙

3 months

This is going to sound crackers but bear with me...! Maggie has become obsessed with my left b @ob . She massages it (claws!) and rubs her face against it. It's a fairly new 'habit' (1-2 months). Given dogs can 'sense' all sorts of health stuff...is it worth telling my GP 1/

25

4

109

@MEFoggyDog

ME Foggy Dog 💙

6 months

Daydreaming this morning. The #DragonsDen furore has been rumbling on since Weds (when pre-broadcast promotion started). There has been no attempt to implement damage limitation in 5 days. @BBC and @BBCDragonsDen not concerned re reputational damage? #pwME and supporters, 1/

9

12

104

@MEFoggyDog

ME Foggy Dog 💙

4 months

Too many people living with severe M.E are terrified of needing to go into hospital. On what planet is that 'ok'? Comment left on - Please sign 👆 #DontLetMEDie #BringMillieHome

Tweet media one

3

32

107

@MEFoggyDog

ME Foggy Dog 💙

2 years

You should understand that un-refreshing sleep is an M.E. symptom. So, when we run out of energy it is never possible to fully recharge by having a good sleep. #health #chronicillness

4

22

106

@MEFoggyDog

ME Foggy Dog 💙

4 months

Time to state the bleeding obvious. 'The community' need to put their own health first today. If you are struggling to cope with #BringMillieHome please reconsider taking part today Although we need 'all hands on deck', I do not want #pwME severely deteriorating as a direct 1/

5

17

102

@MEFoggyDog

ME Foggy Dog 💙

8 months

Happy Gotcha Day #sophiefromromania !! A whole year since you move in to your furever home 😍 It's been amazing to see your progress, slowly slowly...one paw in front of the other Have a great day @ruskin147 @DianeCoyle1859 and Sophie 🐶🐾 Maggie on her Gotcha day 👇 and now 👇

Tweet media one

Tweet media two

0

5

97

@MEFoggyDog

ME Foggy Dog 💙

3 years

Imagine... You become chronically sick. The Drs you trust tell you to take part in non-pharmaceutical therapies Those therapies cause you to deteriorate SIGNIFICANTLY The DR says you 'did it wrong' Then you find out there is nowhere central to report your harms 1/2

2

29

100

@MEFoggyDog

ME Foggy Dog 💙

3 years

Question for #pwme . If you are watching tv and someone in the same room is playing social media videos on their phone 'out loud' does it cause sensory overload for you? It does for me, I have to leave the room. 🤔 #mecfs

40

4

101

@MEFoggyDog

ME Foggy Dog 💙

6 years

Last night, a friend I haven't seen face to face for 2 decades msg'd me and asked what 'the M.E film on Netflix' was called. He wanted to 'educate himself' after seeing a post on my personal FB. Words can't express how much it meant to me personally. #mecfs .

5

7

98

@MEFoggyDog

ME Foggy Dog 💙

6 months

I know many #pwME will 'get' this. I feel guilty. My M.E-affected body has finally buckled after 2 weeks of additional stress AND the eye A&E visit yesterday. I am too sick to go to A&E for the re-run today. It's a worrying health thing and I can't support. Argh! 😡😭 #pwME

13

4

99

@MEFoggyDog

ME Foggy Dog 💙

9 months

CBT is to be offered as a 'treatment' alongside HRT for Menopause. Waiting lists are through the roof for mental health services. How will this help with the physical symptoms? Seen on @GMB Do men get offered CBT for biological issues specific to men?

14

7

98

@MEFoggyDog

ME Foggy Dog 💙

6 months

I have contacted @mariacaulfield and asked that she step in for her constituent @Mariararoo . I have provided a copy of our 'Politicians advocacy guide for severe M.E' @StripyLightCIC @TheChronicColab 🩵 #pwME #MEcfs

11

16

94

@MEFoggyDog

ME Foggy Dog 💙

16 days

I got an apology. Not sanctioned. Confirmation of review in 18m. No more job centre appts....for now. I have 'limited capability to work'. #pwME

@MEFoggyDog

ME Foggy Dog 💙

17 days

I'm going to be sanctioned. I get UC (working tax credits). They were booked to call me at 12.30 yesterday. I got a business call (0800 that I thought was UC) at 12.40. UC called me at 12.46. I missed the call because I was on the important business call. Is this system 1/

7

8

54

11

8

95

@MEFoggyDog

ME Foggy Dog 💙

2 months

Maggie is not a 'wonder dog'. She is a dog with a weird b@ @b obsession 🤪 I got the all clear 🥳 (She may have just picked up on hormone changes) #pwME #MEcfs

@MEFoggyDog

ME Foggy Dog 💙

2 months

Ribs/chest still very painful (3rd day). Mammogram has just made it worse. 3 hrs in hospital having tests today. Soon know if Maggie is a 'wonder dog'. #pwME

0

0

16

22

0

95

@MEFoggyDog

ME Foggy Dog 💙

3 months

There has been ONE national press story about M.E during #MEAwarenessWeek (relates to N.I protest 👏) It must be that there is NOTHING to talk about 🤔 I contacted 15 news outlets with pitches- no responses 1.25 million meet M.E criteria in #UK . Where is the coverage?! #Media

8

34

94

@MEFoggyDog

ME Foggy Dog 💙

3 years

#MECFS is not 'controversial'. It's an abuse of #humanrights issue. Let's change the narrative.

6

33

93

@MEFoggyDog

ME Foggy Dog 💙

2 years

@ClovexIe @sajidjavid @LucyChappell2 Yet M.E patient research participants have said removing the clots 'only' offers temporary relief. It's complex and we shouldn't concentrate solely on clots.

7

0

93

@MEFoggyDog

ME Foggy Dog 💙

4 months

Words I said to my elderly parents last night 'If I ever deteriorate to very severe and have a horrific experience in hospital, I give you permission to shout/make noise/protest/ complain to GMC/take legal action ASAP.' I suggest other #PwME give loved ones the same directive.

8

20

92

@MEFoggyDog

ME Foggy Dog 💙

3 years

Why are some #pwme uncomfortable with calling themselves disabled? #MECFS is a #disability and we have rights as a 'protected group' under the #EqualityAct . I am disabled.

16

16

89

@MEFoggyDog

ME Foggy Dog 💙

3 years

Any other #pwme think that medics and #NHS clinics that say 'we've never seen this type of chronic illness before' or 'we had no idea 'mild' viral infections could lead to chronic illness' are 'outing' themselves as M.E non-believers? Just me? #mecfs

10

13

89

@MEFoggyDog

ME Foggy Dog 💙

2 years

Been checked up on (thank you). Tearful and feeling overwhelmed by M.E work but not feeling suicidal. Don't worry #PwME .

4

2

90

@MEFoggyDog

ME Foggy Dog 💙

1 month

To non-pwME, this highlights how limited my energy is (I have 'mild' M.E) I drove for 10 minutes to my hairdressers. I had a dry cut (30 mins) Drove home via the local post office. Stood in a queue for 5 minutes. I am now home and out of energy. It doesn't take much!

7

10

91

@MEFoggyDog

ME Foggy Dog 💙

6 months

Also... 'Is not an endorsement' Pardon? After hearing her pitch all 5(+1) Dragon's wanted to invest. 1 invested £50k The contestant is permitted to use 'as seen on @BBCDragonsDen ' on ads. How is that not endorsement?! That's why due diligence is v important! #PwME #MEcfs

@MEFoggyDog

ME Foggy Dog 💙

6 months

If this is the response everyone who complained to @BBC will get....👇 'Dragon's Den features products from entrepreneurs and is not an endorsement of them. "Dragons' Den shows real businesses pitching to investors to lift the lid on what happens in the business world. This 1/

4

3

30

1

17

89

@MEFoggyDog

ME Foggy Dog 💙

3 years

It seems Long Covid is now being treated EXACTLY THE SAME as M.E in the UK press. Diminish it. Doubt that it exists. Say it's likely depression/anxiety Insinuate patients are hypochondriacs/lazy. The Telegraph is a Government mouthpiece - this is telling. #politics #health

Tweet media one

17

23

89

@MEFoggyDog

ME Foggy Dog 💙

6 months

I want a day (or even a morning) when I don't have to micro-manage EVERY. SINGLE. THING. I. DO. I miss spontaneity. Using yesterday as an example- 'If I get out of bed now, will sitting upright for an extra hour cause me to wilt too quick?' 'Should I let Maggie out 1/ #pwME

5

10

89

@MEFoggyDog

ME Foggy Dog 💙

1 year

Watching a blood cancer awareness segment on @5_News . My dad - 'you could say exactly the same about M.E'. *heart tweak* Thanks Dad for paying attention for the past 9 years. - Drs don't know how to diagnose - awareness is needed - many symptoms overlap with M.E. 1/2

1

8

87

@MEFoggyDog

ME Foggy Dog 💙

1 year

Feeling 'it' today. 'It' = emotional 'why me?' 'I hate M.E' fed-up-ness. Dining room table is where you'll find me quietly and (possibly) tearfully getting #Cardiff last minute stuff sorted. To all other #pwME feeling 'it' today......🫂 (group hug). #MEcfs

17

0

87

@MEFoggyDog

ME Foggy Dog 💙

3 years

I've seen a Long Covid tweet saying it's difficult to gaslight a large number of patients and there is strength in numbers. #MECFS affects 17-30 million worldwide. 250,000+ in the UK. We are gaslit and neglected and have been for decades. Most chronically sick patients are.

7

13

88

@MEFoggyDog

ME Foggy Dog 💙

5 months

What about if you see a drunk Ostrich? (Very droopy eyes) ? Asking for...a friend 😬

20

5

88

@MEFoggyDog

ME Foggy Dog 💙

1 year

There are now an estimated 1.25 MILLION people living with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome ( #MEcfs ) in the #UK . Pssst. It's not 'feeling tired'. Pass it on. #PwME #Health

2

37

86

@MEFoggyDog

ME Foggy Dog 💙

4 months

In the absence of adherence to the M.E @NICEComms guideline - the ONLY medical guidance available for this complex disease...patients need an NHS protocol. Their lives depend on it. Sign here - #DontLetMEDie #BringMillieHome #pwME

Tweet card media

Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.) - M.E....

Add your name:

organise.network

1

43

87

@MEFoggyDog

ME Foggy Dog 💙

6 months

I reported 'Acu Seeds' to Trading Standards last Monday. Website info- 'Trading Standards use the information you give them to investigate unfair trading and illegal business activity, like rogue traders and scams.' #pwME #MEcfs

2

9

87

@MEFoggyDog

ME Foggy Dog 💙

2 years

'Sleep disturbance' in M.E. We all have unrefreshing sleep but what else? In me, this means- -insomnia - Always awake by 6am at the latest What does yours 'look like'? Told last night that I am a 'rare breed' as I am best in the mornings. Linked to sleep? #MEAwarenessMonth

47

9

84

@MEFoggyDog

ME Foggy Dog 💙

1 month

I'm on a NHS training course. I've been asked if I know what 'personalised care' is. My reply - 'I know what it is but have never experienced it. There is no 'care', personalised or otherwise, for M.E./C.F.S in the NHS. Looking forward to learning how it SHOULD work.' #pwME

4

8

87

@MEFoggyDog

ME Foggy Dog 💙

2 years

Heard 3 times this weekend - 'He may well have Long Covid but he has bills to pay and has to keep working'. The vast majority have no choice but to give up work - they have bills to pay too. No one CHOOSES this. #pwME #pwLC

3

6

83

@MEFoggyDog

ME Foggy Dog 💙

5 months

Open letter comment. 'As an ME/CFS patient, I am witnessing fellow patients with severe or very severe ME/CFS being inappropriately psychologised, malnourished and subjected to inappropriate care in NHS hospitals. This treatment is not in line with the 2021 updated NICE .. 1/

2

20

85

@MEFoggyDog

ME Foggy Dog 💙

3 years

Posting in case this resonates for other #pwme . In recent weeks, there have been a number of research papers/breakthroughs for Long Covid. This is wonderful to see and I am happy that LC is being addressed in the way I wish M.E had been over past decades But It hurts 1/2

3

13

83

@MEFoggyDog

ME Foggy Dog 💙

2 years

Feeling a little bit tearful tbh. Rheumatologist has just called. Latest blood tests still have 'high' inflammation markers. 'I am not happy to just leave this. I'm referring you for a full body CT scan' I feel seen. In 15 yrs of M.E my inflammation has always been low 1/2

6

0

84

@MEFoggyDog

ME Foggy Dog 💙

7 months

You've seen the push-back on this announcement 👇 This scheme is not appropriate for the millions in the #UK with M.E and some types of Long Covid. After the election (whenever that is), how will YOU tackle increased need for disability benefits? @Keir_Starmer @wesstreeting 1/

@VictoriaAtkins

Victoria Atkins

@VictoriaAtkins

7 months

Work makes us healthier, wealthier and happier. We don’t think anyone’s potential should be written off because of ill health. Our new WorkWell service is designed to provide the support that people need to stay in work, or return as soon as possible.

135

11

16

5

23

84

@MEFoggyDog

ME Foggy Dog 💙

10 months

@Peston There is nothing that could make a person living with M.E 'improve' enough to return to employment. There are no treatments/cures. A massive chunk of these 'economically inactive' people meet M.E diagnostic criteria (may not have a diagnosis yet)

4

7

83

@MEFoggyDog

ME Foggy Dog 💙

3 years

DEEPLY. Where were many of these researchers/scientists prior to 2020? As a LC and M.E patient I am living in a parallel universe. Today is my 19 month-iversary of LC. Yet, more is known about LC biomechanisms than the M.E I've now had for nearly 15 years. Make it make sense.

5

8

81

@MEFoggyDog

ME Foggy Dog 💙

6 years

You only see us when we are well enough to be seen #mecfs

Tweet media one

0

37

75

@MEFoggyDog

ME Foggy Dog 💙

3 years

Something for 'new' #longcovid patients to be aware of. #mecfs - appropriate 'pacing' is being inappropriately rebranded for Long Covid. Pacing should not include any idea of you increasing your activity. Pacing is about managing your activity to stay within your available 1/2

2

16

81

@MEFoggyDog

ME Foggy Dog 💙

2 years

For newly diagnosed #PwME . 🚩 words If you spot these, the 'treatment' is not appropriate for #MECFS . 'Increase' 'Building' 'Gradual' 'Graded' 'Staggered' M.E peeps add others if there are any I haven't thought of.

6

16

80

@MEFoggyDog

ME Foggy Dog 💙

3 years

Can I suggest that no one posts/shares PGs Guardian article? The Guardian will see it as a popular content. Don't engage. #LongCovid #pwme #mecfs

5

15

81

@MEFoggyDog

ME Foggy Dog 💙

1 year

In recent weeks, I have seen LCs tweet 'the disease we shall not mention' (M.E). Of course, I included this when I spoke to DHSC about M.E. stigma earlier this week. Stripy's training (very briefly to explain case numbers) = Covid19 is triggering M.E/cfs Stop the stigma. #pwME

8

12

82